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.
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.
Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.
Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.
Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.
Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
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.