OBJECTIVE: Describe the knowledge of physicians in an Oncology Clinic and a school hospital, of both the private health network, located in Manaus-AM about palliative care (PC), and define the role of religion in medical care of patients with advanced severe illness, with no disease modifying therapy.
METHOD: This is a cross-sectional, descriptive, and observational study. After signing the Free and Informed Consent Term, the physicians included completed a professional membership record and answered questions about a hypothetical clinical case through multiple choice answers. The clinical case described a patient with advanced chronic disease not a candidate for disease-modifying therapy in the final phase of life. The questions involved aspects related to nutrition, venous access, and hospitalization in the intensive care unit (ICU).
RESULTS: A total of 31 physicians from different specialties were included. About 67.7% consider their knowledge about PC insufficient, and none of the participants is unaware of this modality of care. The prevalence of invasive behaviors related to patient nutrition, venous access, and indication of ICU and cardiopulmonary resuscitation (CPR) was higher among physicians without religion (HR = 1.84; HR = 2.89; HR = 1.04, respectively) than among those who follow a religion.
CONCLUSION: Absence of religion is associated with higher invasive behaviors on the part of physicians. Further studies are needed to better define this relationship.
The aim of this paper was to study the viewpoints of Sunni Islam and Hinduism on euthanasia to explore whether the Sunni tradition's belief in the hereafter and the Hindu culture's faith in reincarnation have any impact on these two religions' positions on the rejection or justification of euthanasia. Examining these two theologies' approaches demonstrated that Sunni Islam considers euthanasia suicide/homicide in light of the belief in the hereafter, whereas Hinduism can justify euthanasia through Gandhi's interpretation of ahimsa, on the condition that all methods to alleviate the patient's pain and suffering have been exhausted.
Religion and spirituality often become relevant after the death of a loved one. In light of the multidimensionality of religion and spirituality, we investigate the role of communal religiosity in predicting associations between personal religiosity and bereavement outcomes. A mixed-methods analysis of interviews and questionnaires from 33 bereaved adults was conducted. Interview mentions of personal and communal religiosity, and their associations with self-reported religious coping and grief symptoms, were assessed. Personal (ß = 0.55, p < .01) and communal religiosity (ß = 0.50, p < .01) predicted positive religious coping, as well as negative religious coping and grief severity (ß = 0.53, p < .01). In addition, personal religiosity predicted more negative religious coping for participants who expressed low communal religiosity, ß = 1.58, SE = .15, t(28) = 4.08, p < .001. After loss, personal religiosity by itself is not necessarily protective. The presence of personal and communal religiosity contributes to positive religious coping, and reduced negative religious coping. However, the absence of communal religiosity indicates vulnerability.
Grief following a death loss is a common experience that all individuals face at some point in life. There, however, are only a few in-depth studies regarding grief in cultures around the world and specific roles that rituals and beliefs related to death may have in the grieving process. Results of interview data from eight grieving Turkish women revealed three themes: (a) metaphors of loss, (b) funeral rituals, and (c) rituals in relation to control and personal factors. Overall, participants' sense of control appeared to influence their grief experiences and perceptions of rituals.
In this discussion paper we consider the influence of ethnicity, religiosity, spirituality and health literacy on Advance Care Planning for older people. Older people from cultural and ethnic minorities have low access to palliative or end-of-life care and there is poor uptake of advance care planning by this group across a number of countries where advance care planning is promoted. For many, religiosity, spirituality and health literacy are significant factors that influence how they make end-of-life decisions. Health literacy issues have been identified as one of the main reasons for a communication gaps between physicians and their patients in discussing end-of-life care, where poor health literacy, particularly specific difficulty with written and oral communication often limits their understanding of clinical terms such as diagnoses and prognoses. This then contributes to health inequalities given it impacts on their ability to use their moral agency to make appropriate decisions about end-of-life care and complete their Advance Care Plans. Currently, strategies to promote advance care planning seem to overlook engagement with religious communities. Consequently, policy makers, nurses, medical professions, social workers and even educators continue to shape advance care planning programmes within the context of a medical model. The ethical principle of justice is a useful approach to responding to inequities and to promote older peoples' ability to enact moral agency in making such decisions.
BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings.
OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects.
METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress.
RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021.
CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.
Fifty years ago, Elisabeth Kübler-Ross' On Death and Dying provided a model of dying as stages of coping with impending loss of one's life. She sought to give dying hospital patients a voice; the result gave a new model for speaking about dying and grieving. This paper examines the model and religious appropriations and crticism of her theme of death as loss.
Using a sample of recently bereaved youth (N = 2,425; Mage = 15.31, SD = 1.50), this study examined associations between dimensions of religiousness and current functioning. Youth reported on their religious service attendance, religious coping, and the importance of religious beliefs and substance use, academic achievement, depressive symptoms, and self-esteem. Greater religious service attendance was associated with lower substance use and the greater importance of religious beliefs was associated with lower substance use and greater self-esteem. Greater religious coping was associated with greater academic achievement. Findings suggest distinct dimensions of religiousness may have differential implications for adolescent functioning after experiencing loss.
BACKGROUND: Studies postulate that certain religious beliefs related to medical care influence the end-of-life (EOL) medical decision making and care of patients with advanced cancer. Because to the best of the authors' knowledge no current measure explicitly assesses such beliefs, in the current study the authors introduced and evaluated the Religious Beliefs in EOL Medical Care (RBEC) scale, a new measure designed to assess religious beliefs within the context of EOL cancer care.
METHODS: The RBEC scale consists of 7 items designed to reflect religious beliefs in EOL medical care. Its psychometric properties were evaluated in a sample of 275 patients with advanced cancer from the Coping With Cancer II study, a National Cancer Institute-funded, multisite, longitudinal, observational study of communication processes and outcomes in EOL cancer care.
RESULTS: he RBEC scale proved to be internally consistent (Cronbach a, .81), unidimensional, positively associated with other indicators of patients' religiousness and spirituality (establishing its convergent validity), and inversely associated with patients' terminal illness understanding and acceptance (establishing its criterion validity), suggesting its potential clinical usefulness in promoting informed EOL decision making. The majority of patients (87%) reported some (“somewhat,” “quite a bit,” or “a great deal”) endorsement of at least 1 RBEC item and a majority (62%) endorsed =3 RBEC items.
CONCLUSIONS: The RBEC scale is a reliable and valid tool with which to assess religious beliefs within the context of EOL medical care, beliefs that frequently are endorsed and inversely associated with terminal illness understanding.
Quand j'ai accepté le principe de cette intervention, un collègue m'a suggéré de rendre compte de mon expérience comme premier titulaire de la Chaire "Religion santé et spiritualité", à Québec. Qu'est-ce que j'y ai aprris ? Je vais donc tenter de relever ce défi. Quelques énoncés centraux peuvent résumer cette expérience. En voici deux, pour commencer ; un troisième arrivera en conclusion.
L'histoire est l'étude du rapport entre l'homme et le temps ou, plus précisément, le rapport entre les sociétés et la durée. Depuis plus de soixante ans, je suis donc professionnellement confronté au temps. Depuis plus longtemps, peut-être, parce que si l'histoire m'attirait dans ma jeunesse, c'est sans doute parce que déjà le temps m'obsédait : le temps de la vie, la vie hors du temps. Forcément, ce temps qu'étudient les historiens est un temps passé, qui a laissé des traces. Pour comprendre les vivants, l'historien fréquente inévitablement les morts.
This study examined the relationship among religiosity, morality, and fear of death. Students (n = 328, 75% women, Mage = 18.9) completed measures of fear of death, frequency of immoral behavior, discrepancy between ideal and actual religious practices, strength of religious beliefs, views of God as punishing or forgiving, and behavior efficacy (the extent to which fate in the afterlife was perceived to be determined by behavior in this life). Frequency of immoral behavior was not related to fears of death, but both strength of religious views and behavior efficacy were negatively correlated with fears of death. In contrast, perceived failure to live up to religious standards was associated with more death anxiety, especially among those with punishing views of God. These findings support the idea that some aspects of religion can help protect people from death anxiety, whereas other aspects of religion can exacerbate fears of death.
Background: Patients in palliative care suffer variously due to underassessment of needs and suboptimal intervention, coupled with lack of access to palliative care. This study attempts to identify effective coping strategies which lead to life satisfaction, among those afflicted with terminal cancer.
Materials and Methods: This observational, cross-sectional study was carried out among terminally-ill cancer patients undergoing palliative care. Cancer patients receiving palliative care who give consent and were aged 18 years or older were included in the study. Those with cognitive deficits, delirium, or psychosis were excluded from the study. COPE scale, Temporal Satisfaction with Life Scale, and sociodemographic Performa were administered and analyzed. Pearson's r correlation coefficient test and multiple linear regression analyses were used to evaluate correlation and effect of coping strategies on life satisfaction.
Results: Religious coping was the most frequently used coping strategy by patients, followed by acceptance. Females showed higher problem-focused coping, whereas males had higher emotion-focused and avoidant coping strategies. Females manifested more religious coping. Males showed more acceptance of their illness. Those without a partner had significantly higher emotion-focused coping strategies and higher religious coping. Income, social support, and problem-oriented coping were positively related to quality of life. Life satisfaction showed significant negative correlation with denial, substance use, and venting utilized as coping methods.
Conclusion: Problem-focused coping (religious coping and acceptance) was found to be more effective than other methods. Patients in palliative care could be instructed for the use of problem-focused coping. Such training might enhance their life satisfaction, helping them experience greater control over the course of illness.
BACKGROUND: Critically ill adult patients who face medical decisions often delegate others to make important decisions. Those who are authorized to make such decisions are typically family members, friends, or legally authorized representatives, often referred to as surrogates. Making medical decisions on behalf of others produces emotional distress. Spirituality and/or religion provide significant assistance to cope with this distress. We designed this study to assess the role of surrogates' spirituality and religion (S/R) coping resources during and after making medical decisions on behalf of critically ill patients. The study's aim was to understand the role that S/R resources play in coping with the lived experiences and challenges of being a surrogate.
METHODS: Semistructured interviews were conducted with 46 surrogates by trained interviewers. These were audio-recorded and transcribed by research staff. Three investigators conducted a thematic analysis of the transcribed interviews. The codes from inter-rater findings were analyzed, and comparisons were made to ensure consistency.
RESULTS: The majority (67%) of surrogates endorsed belief in God and a personal practice of religion. Five themes emerged in this study. Personal prayer was demonstrated as the most important coping resource among surrogates who were religious. Trusting in God to be in charge or to provide guidance was also commonly expressed. Supportive relationships from family, friends, and coworkers emerged as a coping resource for all surrogates. Religious and nonreligious surrogates endorsed coping strategies such as painting, coloring, silent reflection, music, recreation, and reading. Some surrogates also shared personal experiences that were transformative as they cared for their ill patients.
CONCLUSION: We conclude that surrogates use several S/R and other resources to cope with stress when making decisions for critically ill adult patients. The coping resources identified in this study may guide professional chaplains and other care providers to design a patient-based and outcome-oriented intervention to reduce surrogate stress, improve communication, increase patient and surrogate satisfaction, and increase surrogate integration in patient care. We recommend ensuring that surrogates have S/R resources actively engaged in making medical decisions. Chaplains should be involved before, during, and after medical decision making to assess and address surrogate stress. An interventional research-design project to assess the effect of spiritual care on surrogate coping before, during, and after medical decision making is also recommended.
Despite calls for cross-cultural research, Minority world perspectives still dominate death and bereavement studies, emphasizing individualized emotions and neglecting contextual diversities. In research concerned with contemporary African societies, on the other hand, death and loss are generally subsumed within concerns about AIDS or poverty, with little attention paid to the emotional and personal significance of a death. Here, we draw on interactionist sociology to present major themes from a qualitative study of family deaths in urban Senegal, theoretically framed through the duality of meanings-in-context. Such themes included family and community as support and motivation; religious beliefs and practices as frameworks for solace and (regulatory) meaning; and material circumstances as these are intrinsically bound up with emotions. Although we identify the experience of (embodied, emotional) pain as a common response across Minority and Majority worlds, we also explore significant divergencies, varying according to localized contexts and broader power dynamics.
Introduction: Relatives often have to assume responsibility for making end of life choices as surrogate decision-makers for patients with diminished or are lacking capacity. Our aim was to study the influence of religion, culture and social network information on surrogate decision making.
Methods: This study was an exploratory, prospective, survey. Questions addressed the role of surrogates in decision making and the importance and influence of religion, culture and social media on such decisions.
Results: 34 respondents filled out the anonymous survey. Surrogate decision making is a complex process and influenced by many factors.
Conclusion: This survey points to a need for wider studies looking at the factors influencing people when making such important decisions and further social psychology interventions to evaluate whether such decisions can be made more consistent and patient centred.
Context: Better understanding of clinicians' skill communicating with their patients and of patients' trust in clinicians is necessary to develop culturally sensitive palliative care interventions. Race/ethnicity, socioeconomic status, and religiosity have been documented as factors influencing quality of communication and trust.
Objectives: The objective of this study was to explore associations of seriously ill patients' race/ethnicity, socioeconomic status, and religiosity with patients' ratings of the quality of clinicians' communication and trust in clinicians.
Methods: An observational analysis was performed using baseline data from a multicenter cluster-randomized trial of a communication intervention. We enrolled consecutive patients with chronic, life-limiting illnesses (n = 537) cared for by primary and specialty care clinicians (n = 128) between 2014 and 2016 in outpatient clinics in Seattle, Washington. We assessed patient demographics (age, gender, race/ethnicity, education, income, and self-rated health status), Duke University Religion Index, Quality of Communication Scale, and Wake Forest Physician Trust Scale. We used probit and linear regression and path analyses to examine associations.
Results: Patients providing higher ratings of clinician communication included those belonging to racial/ethnic minority groups (P = 0.001), those with lower income (P = 0.008), and those with high religiosity/spirituality (P = 0.004). Higher trust in clinicians was associated with minority status (P = 0.018), lower education (P = 0.019), and clinician skill in communication (P < 0.001).
Conclusion: Contrary to prior studies, racial/ethnic minorities and patients with lower income rated communication higher and reported higher trust in their clinicians than white and higher income patients. More research is needed to identify and understand factors associated with quality communication and trust between seriously ill patients and clinicians to guide development of patient-centered palliative care communication interventions.
This study aimed to elicit the attitudes and beliefs of middle-aged and elderly Moroccan Muslim women regarding mourning and remembrance, to identify whether differences are observable between middle-aged and elderly participants, to explore the role of religion and to document how the actual attitudes of our participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the religious beliefs have a great impact on the views of Muslim women. We found striking similarities between our participants’ views and normative Islamic literature.