A literature review of the PubMed and Web of Science was conducted to identify peerreviewed publications on this topic. Additional search was carried out using Google Scholar. This article reflects on the current state of art in spiritual care as an integrated palliative care approach for patients with neurodegenerative diseases and their caregivers. It proposes developing belief and value based care models for people with life-limiting conditions and their caregivers to prevent health related suffering.
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: In Thailand, most terminally ill patients die in hospital and are looked after by health professionals. Terminally ill patients tend to receive physical care only, while in the main, spiritual care is neglected. This study aimed to explore spirituality in palliative care health professionals and spiritual leaders in the Thai Buddhist context.
METHOD: In this qualitative case study, seven experienced palliative caregivers took part in in-depth interviews. Thematic analysis and a trustworthiness process were used to analyse the data.
FINDINGS: Three themes emerged: (1) the ability for self-awareness and faith; (2) acceptance and compassion for others; and (3) spiritual behaviour while nursing.
CONCLUSION: The results revealed the meaning of spirituality and the necessary characteristics for spirituality in palliative care for the participants, which could serve as a basis for further development.
BACKGROUND: Spirituality is particularly important for patients suffering from life-threatening illness. Despite research showing the benefits of spiritual assessment and care for terminally ill patients, their spiritual needs are rarely addressed in clinical practice. This study examined the factor structure and reliability of the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp) in patients with advanced cancer. It also examined the clinical meaning and reference intervals of FACIT-Sp scores in cancer patients subgroups through a literature review.
METHODS: A forward-backward translation procedure was adopted to develop the Italian version of the FACIT-Sp, which was administered to 150 terminally ill cancer patients. Exploratory factor analysis was used for construct validity, while Cronbach's a was used to assess the reliability of the scale.
RESULTS: This study replicates previous findings indicating that the FACIT-Sp distinguish well between features of meaning, peace, and faith. In addition, the internal consistency of the FACIT-Sp was acceptable. The literature review also showed that terminal cancer patients have the lowest scores on the Faith and Meaning subscales, whereas cancer survivors have the highest scores on Faith.
CONCLUSIONS: The Italian version of the FACIT-Sp has good construct validity and acceptable reliability. Therefore, it can be used as a tool to assess spiritual well-being in Italian terminally ill cancer patients. This study provides reference intervals of FACIT-Sp scores in newly diagnosed cancer patients, cancer survivors, and terminally ill cancer patients and further highlights the clinical meaning of such detailed assessment.
BACKGROUND: Decision-making in palliative care can be complex due to the uncertain prognosis and general fear surrounding decisions. Decision-making in palliative care may be influenced by spiritual and cultural beliefs or values. Determinants of the decision-making process are not completely understood, and spirituality is essential for coping with illness. Thus, this study aims to explore the influence of spirituality on the perception of healthcare decision-making in palliative care outpatients.
METHODS: A cross-sectional study was developed. A battery of tests was administered to 95 palliative outpatients, namely: sociodemographic questionnaire (SQ), Decisional Conflict Scale (DCS), Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being scale (FACIT-Sp), and a semi-structured interview (SSI) to study one's perception of spirituality and autonomy in decision-making. Statistical analyses involved descriptive statistics for SQ and SSI. The Mann-Whitney test was used to compare scale scores between groups and correlations were used for all scales and subscales. The analysis of patients' definitions of spirituality was based on the interpretative phenomenological process.
RESULTS: Spiritual wellbeing significantly correlated with greater levels of physical, emotional and functional wellbeing and a better quality of life. Greater spiritual wellbeing was associated with less decisional conflict, decreased uncertainty, a feeling of being more informed and supported and greater satisfaction with one's decision. Most patients successfully implemented their decision and identified themselves as capable of early decision-making. Patients who were able to implement their decision presented lower decisional conflict and higher levels of spiritual wellbeing and quality of life. Within the 16 themes identified, spirituality was mostly described through family. Patients who had received spiritual care displayed better scores of spiritual wellbeing, quality of life and exhibited less decisional conflict. Patients considered spirituality during illness important and believed that the need to receive spiritual support and specialised care could enable decision-making when taking into consideration ones' values and beliefs.
CONCLUSION: The impact of spiritual wellbeing on decision-making is evident. Spirituality is a key component of overall wellbeing and it assumes multidimensional and unique functions. Individualised care that promotes engagement in decision-making and considers patients' spiritual needs is essential for promoting patient empowerment, autonomy and dignity.
Hope is an important topic in spiritual care in palliative care but the experiences of chaplains with hope have hardly been explored. The objective of this study was to explore Dutch chaplains' experiences with hope in palliative care. Semi-structured interviews were conducted, which were thematically analyzed. The 10 chaplains had a variety of ordinations: Muslim, Protestant, Roman Catholic, Humanistic, or otherwise. Participants spoke about changes in patients' hope, often implying despair and surrender, in which patients' self-reflection was pivotal. Participants felt witnesses of hope, not by offering hope, but by acknowledging patients' hope and despair while being with their patients. They criticized other professionals who, not bearing witness to these experiences, tried to offer hope to patients. We conclude that chaplains may become witnesses of hope in times of despair, which includes the (ideological) critical function of spiritual care.
OPINION STATEMENT: National supportive care guidelines for patients with cancer include recognition of patients' spirituality and spiritual needs. Experts differ on how best to address this dimension to our patients' lives. Some suggest that patients' medical team should take on spiritual care, and others suggest referral to chaplains or collaboration with outside clergy. In our view, the patient's medical team ought to best acknowledge patient spirituality when so desired by the patient, but intervention in the case of serious spiritual crisis ought to be the responsibility of those with specific training in this realm. For some patients, "concordance" between the specific spiritual tradition of the patient and chaplain is necessary where for others, non-denominational, secular, or inter-faith chaplaincy services are welcome. The central role for physicians and nurses in this area, is listening, awareness, respect, and where necessary, referral.
Improving the end of life care experience of people dying in acute care has become a priority for our organization since 2016 with the launch of the "Quality Living and Dying Initiative." This initiative has three distinct foci. The first two areas of focus, advance care planning and standardized comfort measures, are well established while the third focus bereavement program remains in its early stages. Bereavement is recognized as an essential component along the continuum of palliative care. Despite this recognition, bereavement care is often lacking in hospital settings. This paper will describe a telephone bereavement initiative spearheaded by the Spiritual Care Team at our organization.
BACKGROUND: When religious and spiritual (R/S) care needs of patients with advanced disease are met, their quality of life (QoL) improves. We studied the association between R/S support and cancer patients' QoL at end-of-life in Soweto, South Africa.
OBJECTIVES: To identify R/S needs among advanced cancer patients receiving palliative care services and to assess associations of receipt of R/S care with patient QoL and place of death.
METHOD: A prospective cohort study conducted from May 1, 2016 to April 30, 2018 at a tertiary hospital in Soweto, South Africa. Nurses enrolled advanced cancer patients and referred them to the palliative care multidisciplinary team. Spiritual counsellors assessed and provided spiritual care to patients. We compared socio-demographic, clinical, and R/S factors and QoL of R/S care recipients and others.
RESULTS: Of 233 deceased participants, 92 (39.5%) had received R/S care. Patients who received R/S care reported less pain (2.82±1.23 versus 1.93±1.69), used less morphine and were more likely to die at home than patients who did not (57.5% compared to 33.7%). On multivariable logistic regression analysis, adjusting for significant confounding influences and baseline African Palliative Care Association Palliative Outcome Scale (APCA POS) scores, receipt of spiritual care was associated with reduced pain and family worry (OR, 0.33, 95% CI, 0.11-0.95); (OR, 3.43, 95% CI, 1.10-10.70).
CONCLUSION: Cancer patients have R/S needs. R/S care among our patients appreared to improve their end-of-life experience. More research is needed to determine the mechanisms by which R/S care may have improved the observed patient outcomes.
Purpose: The aim of the study was to examine the psychosocial problems and spiritual coping styles of the family caregivers related to patients receiving palliative care.
Design and Methods: The research sample consisted of 76 family caregivers related to palliative care patients. The data collection method used were questionnaire forms. The two forms used were Hospital Anxiety Depression Scale and Religious Coping Methods Scale.
Findings: The mean anxiety score of the participants was 10.86 ± 4.30, mean depression score was 9.38 ± 3.66, mean positive coping scale score was 25.31 ± 3.85, and mean negative coping scale score was 10.32 ± 3.38.
Practice Implications: Healthcare professionals involved in palliative care are encouraged to evaluate the spiritual experiences of family caregiver to support their wellbeing.
Spirituality and religion are at the core of Kenyan life. Pastoral leaders play a key role in shaping the individual and community's response to living with chronic and life-threatening illnesses. Involvement of religious leaders would therefore be critical in advocacy and education efforts in palliative care (PC) to address the needs of this population. The goal of this study was to evaluate the knowledge and perceptions of religious leaders in Western Kenya regarding PC. This was a mixed-methods study with 86 religious leaders utilizing a 25-question survey followed by 5-person focus group discussions. Eighty-one percent of participants agreed that pastors should encourage members with life-threatening illnesses to talk about death and dying. However, almost a third of participants (29%) also agreed with the statement that full use of PC can hasten death. The pastors underscored challenges in end-of-life spiritual preparation as well as the importance of traditional beliefs in shaping cultural norms. Pastors supported the need for community-based PC education and additional training in PC for religious leaders. The results of this study confirm the dominant role of religion and spirituality in PC in Kenya. This dominant role in shaping PC is tied closely to Kenyan attitudes and norms surrounding death and dying.
BACKGROUND: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion.
AIM: To understand nonreligious theistic parents' spirituality and to explore how parents discuss death with their terminally ill children in mainland China.
DESIGN: Qualitative study.
SETTING/PARTICIPANTS: This study was conducted in the hematology oncology center at Beijing Children's Hospital. Participants in this study included 16 bereaved parents.
RESULTS: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents' spiritual needs. Parents' spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism.
CONCLUSION: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient's personal belief in death should be assessed before discussing death with them.
CONTEXT: Dementia marks an increasingly prevalent terminal illness for which palliative care, including spiritual care, could improve quality of life. Research gaps exist in understanding the intersection of dementia, spirituality, and palliative care.
OBJECTIVES: We conducted the first scoping review examining the nature and breadth of peer-reviewed studies across these three topics to guide future research.
METHODS: The scoping review followed methods from The Joanna Briggs Institute Reviewers' Manual (2015). We developed a priori a scoping review protocol outlining the Population, Concept and Context for study, data sources, search strategy, inclusion/exclusion criteria, and procedure for screening, extracting, and analyzing data.
RESULTS: The final sample consisted of 19 studies with the following themes: Characterizing Spiritual Needs, Preferences, and Resources; Characterizing Palliative or Spiritual Care; Predicting Provision of Spiritual Care; and Assessing Spiritual Care Interventions. Eighteen studies were published in the past decade, and eleven were based in Europe. The majority of studies focused on long-term care settings, grouped stages of dementia or did not specify dementia stage, and investigated interventions indirectly related to spiritual care. Many studies were limited in sample size and in generalizability/ transferability and used less sophisticated research designs.
CONCLUSIONS: Research across dementia, spirituality, and palliative care needs to examine distinct stages of dementia, settings beyond long-term care, and formal spiritual care interventions plus utilize rigorous study designs (e.g., randomized clinical trials). Such research could advance practice and policy that enhance quality of life for tens of millions of persons with dementia and their family members worldwide.
Background: spiritual care is a key domain of quality palliative care. Spiritual distress is highly prevalent in patients and their families facing serious illness. Guidelines support the ethical obligation of health care providers to attend to spiritual distress as part of total distress. All clinicians require education and support to provide this care to patients and their families facing serious illness.
Objective: This project focused on the development of a curriculum for education of health care professionals in spiritual care. It was based on a consensus-derived generalist-specialist model of spiritual care, with all clinicians providing generalist-spiritual care and trained chaplains providing specialist spiritual care.
Design: The curriculum was designed for classroom and online learning.
Setting: The curriculum is appropriate for all clinical settings in the United States and internationally.
Measurements: Needs assessment surveys and course evaluation data have provided a basis on which to develop and refine the curriculum. This curriculum is built on a pilot Interprofessional Spiritual Care Education Curriculum (ISPEC) course held at the Veterans Administration, DC.
Results: Needs assessment and course evaluation data support the ISPEC course content.
Conclusions: The ISPEC curricula serve as a much-needed training resource to improve spiritual care for all people with serious illness.
AIM: To systematically review qualitative studies exploring families' experiences of spiritual care at the end of life in acute hospital settings.
BACKGROUND: Although there is a widespread belief that the consideration of spiritual and religious needs is out-dated in the context of secularism, from a practical perspective patients and families appear to benefit from spiritual support at the end of life.
METHODS: Six key databases, CINAHL, Medline, EMBASE, Global Health Library, Web of Science, and Applied Social Sciences Index and Abstracts (ASSIA), were searched and three reviewers independently extracted the data and coded it into themes and subthemes. The Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) was used as a reporting framework.
RESULTS: Five main themes emerged: anticipating needs; honouring the family by honouring the patient; personal connection; lack of sensitivity and making space for religious & spiritual practices.
CONCLUSIONS: Families experiencing end of life care in acute hospital settings may benefit from spiritual care. While this can also be considered as fundamental care, understanding this through the lenses of spiritual care allows for the incorporation of religious and spiritual practices that many seek at this time, irrespective of their faith perspectives.
RELEVANCE TO CLINICAL PRACTICE: Although hospice care is well established internationally, many families experience end of life care in acute hospital settings. Nurses usually get to know families well during this time, however the demands of the clinical environment place restrictions on family care and the perception of lack of communication, limited support and/or limited sensitively can compound the families' suffering. Consideration of families' spiritual needs can help to support families during this time. Nurses are ideally placed for this and can anticipate and plan for patient and family needs in this regard, or refer to a specialist such as the Health Care Chaplain.
L'objectif du réseau est de promouvoir au sein de nos sociétés la compréhension, la reconnaissance et l'intégration de la spiritualité dans les milieux de la santé. Il se décline en trois axes : optimiser la qualité des prestations des professionnels de santé ; améliorer la qualité de l'accompagnement par les professionnels mandatés ; sensibiliser les organismes communautaires aux bénéfices d'une intégration de la spiritualité et les aider à construire des politiques adaptées.
BACKGROUND: Spirituality has been recognised as an essential aspect of patient care.
AIM: To assess the greatest facilitators that would help to provide spirituality for paediatric end of life. Methods: Two hundred and fifty oncology nurses were surveyed using a spirituality and spiritual care rating questionnaire.
FINDINGS: The greatest facilitators perceived by nurses were: believe in spirituality as a unifying force that enables one to be at peace with oneself and the world; listening and allowing patients time to discuss and explore their fears; and using art, creativity and self-expression; respect for privacy, dignity and religious and cultural beliefs of a patient.
CONCLUSIONS: Many nursing-related facilitators to spirituality care were found. They need to be addressed and supported through education and training.
This study examines the prevalence of religiosity, death anxiety, and hope in a sample of New Zealand community hospice patients in the last 6 months of life. It explores the factors triggering distress or hope and examines whether religiosity is protective against death anxiety for this population. Early studies showed religious faith helps relieve death anxiety, but later work suggests this may only be the case in societies which are generally religious. Very little research has been conducted on this topic in New Zealand, from which recent censuses indicate is an increasingly secular country. If religion is not an important source of hope for dying, it is important to explore what factors do help relieve existential anxiety and to consider their clinical relevance. This study confirmed that organized religion was not a major support factor. Yet several people who declared themselves nonreligious scored highly for intrinsic religiosity and were among the most hopeful participants. This could suggest that spirituality may be more relevant than organized religion in relieving existential distress. The main source of hope for most participants was joyful memories and meaningful relationships. Fear of being a burden and of causing family suffering were the most significant causes of distress. Systematic spiritual assessment for all patients, not just those with a declared religious faith, a biography service, and psychotherapy, may all have a role in managing death anxiety at the end of life. Further work with larger and more diverse populations would be needed to confirm these findings.
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.