OBJECTIVES: Though critical care physicians feel responsible to address spiritual and religious needs with patients and families, and feel comfortable in doing so, they rarely address these needs in practice. We seek to explore this discrepancy through a qualitative interview process among physicians in the intensive care unit (ICU).
METHODS: A qualitative research design was constructed using semi-structured interviews among 11 volunteer critical care physicians at a single institution in the Midwest. The physicians discussed barriers to addressing spiritual and religious needs in the ICU. A code book of themes was created and developed through a regular and iterative process involving 4 investigators. Data saturation was reached as no new themes emerged.
RESULTS: Physicians reported feeling uncomfortable in addressing the spiritual needs of patients with different religious views. Physicians reported time limitations, and prioritized biomedical needs over spiritual needs. Many physicians delegate these conversations to more experienced spiritual care providers. Physicians cited uncertainty into how to access spiritual care services when they were desired. Additionally, physicians reported a lack of reminders to meet these needs, mentioning frequently the ICU bundle as one example.
CONCLUSIONS: Barriers were identified among critical care physicians as to why spiritual and religious needs are rarely addressed. This may help inform institutions on how to better meet these needs in practice.
Over time, end of life care has been heavily influenced by the systems of religion, ethics and spirituality. The Sikh religion was started by Guru Nanak Dev Ji in 1469. It has a unique philosophical understanding of life, death and God which can be relevant to commonly encountered clinical scenarios. Concepts such as ‘Ik-Oankar’, Hukam (God’s will), ego and karma all influence how practising Sikhs respond to situations in everyday life. Understanding the spiritual underpinnings of the Sikh religion is therefore important for clinicians caring for this group of patients. This article will explore the fundamental concepts of the Sikh religion and how these apply to common scenarios encountered within palliative care.
OBJECTIVE: Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC).
METHOD: Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes.
RESULTS: Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs.
SIGNIFICANCE OF RESULTS: The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.
This article considers a particular aspect of palliative psychology that is inherent to the needs in the area of attitudes concerning Advance Healthcare Directives (AHDs) among Italian physicians and nurses after the promulgation of Law No. 219/2017 on AHDs and informed consent in 2018. The study utilized a mixed-method approach. The group of participants was composed of 102 healthcare professionals (63 females and 39 males). The quantitative part utilized the following scales: Attitudes toward Euthanasia, the Religious Orientation Scale, the Balanced Inventory of Desirable Responding, and the Testoni Death Representation Scale. The results were mostly in line with the current literature, especially concerning a positive correlation between religiosity and the participants' rejection of the idea of euthanasia. However, the qualitative results showed both positive and negative attitudes towards AHDs, with four main thematic areas: "Positive aspects of the new law and of AHDs", "Negative aspects of the new law and of AHDs", "Changes that occurred in the professional context and critical incidents", and "Attitudes towards euthanasia requests." It emerged that there is not any polarization between Catholics or religious people and secularists: Their positions are substantially similar with respect to all aspects, including with regard to euthanasia. The general result is that the law is not sufficiently understood, and so a quarter of the participants associate AHDs with euthanasia. Discussions on the opportunity for palliative psychologists to help health professionals to better manage these issues through death education courses are presented.
PURPOSE: Although some research has been done on end-of-life (EOL) preferences and wishes, our knowledge of racial differences in the EOL wishes of non-Hispanic White and non-Hispanic Black middle-aged and older adults is limited. Previous studies exploring such racial differences have focused mainly on EOL decision-making as reflected in advance healthcare directives concerning life-sustaining medical treatment. In need of examination are aspects of EOL care that are not decision-based and therefore not normally covered by written advance healthcare directives. This study focuses on racial differences in non-decision-based aspects of EOL care, that is, EOL care that incorporates patients' beliefs, culture, or religion.
AIM: To test the combined effects of race, socioeconomic status, health status, spirituality, perceived discrimination and medical mistrust on the EOL non-decision-based desires and wishes of a representative sample of non-Hispanic White and non-Hispanic Black older California adults.
METHODS: This cross-sectional study used data from the Survey of California Adults on Serious Illness and End-of-Life 2019. To perform data analysis, we used multiple logistic regression models.
RESULTS: Non-Hispanic Blacks reported more EOL non-decision-based desires and wishes than non-Hispanic Whites. In addition to gender, age, and education other determinants of EOL non-decision-based medical desires and wishes included perceived and objective health status, spirituality, and medical trust. Poverty level, perceived discrimination did not correlate with EOL medical wishes.
CONCLUSION: Non-Hispanic Blacks desired a closer relationship with their providers as well as a higher level of respect for their cultural beliefs and values from their providers compared with their White counterparts. Awareness, understanding, and respecting the cultural beliefs and values of older non-Hispanic Black patients, that usually are seen by non-Hispanic Black providers, is the first step for meaningful relationship between non-Hispanic Black patients and their providers that directly improve the end-of-life quality of life for this segment of our population.
Background: End-of-life decisions are highly complex socio-normative and ethical phenomena. The goal of this study was to provide an assessment of public opinions in Israel concerning aspects of end-of-life decisions.
Methods: An online cross sectional study was performed in February 2020. The primary tool including items pertaining to death assistance and truth telling to patients. A sample of 515 participants representative of the adult Israeli population was obtained.
Results: The majority of participants (71%) supports telling the entire truth to patients even in harsh conditions. Support for truth telling decreases with affiliation to religion, with as little as 40% support among ultra-orthodox. People with vocational education are the least supportive of truth telling. Concerning doctor assisted death, almost half (49%) of the sample were supportive. Opposition is positively associated with religiosity, with 90% of ultra-orthodox and 58% of religious participants opposing doctor-assisted death, compared to only 18% among seculars. Non-Jews were 3.35 times (95%CI: 1.90, 5.91) more likely to oppose doctor assisted death than Jews (p < .0001). An Interrelationship analysis crossing between attitudes revealed that the largest group (39%) was comprised of participants who support both (“autonomists”).
Conclusions: Israelis are overwhelmingly supportive of truth telling to patients. In contrast, Israeli public opinions on doctor assisted death are divided. For both attitudes, religiousness plays a crucial role as a catalyst for conservatism and opposition to change. Almost a half of the public is also supportive of an autonomist approach that would allow patients to decide on ending their own lives.
Introduction : Cicely Saunders a introduit la notion de « total pain » dans la médecine palliative. Dans cette approche, l’attention aux besoins spirituels – dont la religion – en fait partie intégrante. Le médecin généraliste (MG) tient un rôle important dans les soins palliatifs jusqu’au décès à domicile. Cette étude s’intéresse à l’abord de la religion par les MG avec leurs patients.
Méthode : Douze entretiens semi-directifs ont été menés auprès de médecins généralistes (MG) exerçant dans les Hautes-Pyrénées. Le guide d’entretien a été construit suite à l’élaboration d’un protocole de validation qui a aussi servi à l’analyse des données. L’émergence de nouveaux indicateurs ont été intégrés dans cette grille.
Résultats : Les besoins spirituels et religieux sont peu cités par les MG parmi les besoins de la personne malade, contrairement aux besoins physiques et psychologiques. L’abord de la religion par les MG est relié aux « non-dits » et à la gêne ressentie. Certains sollicitent une personne ressource. L’inexpérience, la crainte de prosélytisme, le manque de temps et la laïcité sont d’autres facteurs cités. Le fait que la demande vienne du patient et les convictions personnelles du MG influencent l’abord de ce sujet. Les aspects religieux les plus cités sont la vie après la mort, les rites funéraires et les représentants du culte.
Conclusion : Dans cette étude qualitative, il apparaît que les besoins spirituels et religieux sont peu évoqués par les MG bien qu’ils considèrent comme important le respect des convictions des patients, l’empathie et le rôle privilégié qu’ils tiennent. Les causes en sont multiples et sont ancrées dans la relation médecin–malade.
BACKGROUND: Preserving personal dignity is an important part of palliative care. Generally, autonomy, independency and not being a burden to others are emphasised for preserving dignity. Dignity has not been studied yet from the perspective of the growing group of patients with a migration background living in Western countries.
AIM: To gain insight into (1) what patients - and their relatives - with a Turkish, Moroccan or Surinamese background, living in the Netherlands, in their last phase of life find important aspects of dignity, and (2) how care professionals can preserve and strengthen the dignity of these patients.
DESIGN: Qualitative thematic analysis of semi-structured interviews.
PARTICIPANTS: A total of 23 patients and 21 relatives with a Turkish, Moroccan or Surinamese background were interviewed.
RESULTS: For respondents dignity encompassed surrender to God's or Allah's will and meaningful relationships with others, rather than preserving autonomy. Surrender to God or Allah meant accepting the illness, the situation and performing religious practice. A meaningful relationship meant being assisted or cared for by family members and maintaining a social role. Professionals could preserve dignity by showing respect and attention; guaranteeing physical integrity, hygiene and self-direction; and indirect communication about diagnoses and prognoses.
CONCLUSIONS: Religion and appropriate involvement of family members are important aspects of dignity in the last phase of life, in addition to autonomy and independency. Care professionals need to take these factors into account in order to provide person-centred care.
Presented here for analysis are distinct and opposed Buddhist perspectives on the issue of withdrawing life support from a brain-dead individual. Of the four views considered, Peter Harvey argues that withdrawal of care and cessation of treatment is justifiable in a Buddhist context. Another perspective (Scott Stonington and Pinit Ratanakul) points out that the Buddhist physician who withdraws a respirator acquires a karmic demerit that can negatively affect this life and future lives. This second view then concludes that Western bioethical resources are inadequate to address the problem of withdrawal of care. In light of these opposing ethical stances grounded in sectarian viewpoints, this presentation will argue that religious ethics should not be considered “irrational” due to their religious foundations. Furthermore, importing local religious concepts can be deemed morally justifiable if doing so endorses the “moral point of view” in its appeal to universalizability, impartial justice, beneficence, and adherence to a set of normative principles. Can ethics criticize religious views that do not conform to the moral point of view or that seem scientifically uninformed, irrational, sectarian, or in some cases even fanatical ? Even though Western concepts for bioethical analysis should not be accepted uncritically, appeal to the moral point of view is necessary for resolving moral problems even if specifics of that perspective may be backgrounded in non-Western contexts.
BACKGROUND: Little is known about the attitudes and practices of intensivists working in Lebanon regarding withholding and withdrawing life-sustaining treatments (LSTs). The objectives of the study were to assess the points of view and practices of intensivists in Lebanon along with the opinions of medical, legal and religious leaders regarding withholding withdrawal of life-sustaining treatments in Lebanese intensive care units (ICU).
METHODS: A web-based survey was conducted among intensivists working in Lebanese adult ICUs. Interviews were also done with Lebanese medical, legal and religious leaders.
RESULTS: Of the 229 survey recipients, 83 intensivists completed it, i.e. a response rate of (36.3%). Most respondents were between 30 and 49 years old (72%), Catholic Christians (60%), anesthesiologists (63%), working in Beirut (47%). Ninety-two percent of them were familiar with the withholding and withdrawal concepts and 80% applied them. Poor prognosis of the acute and chronic disease and futile therapy were the main reasons to consider withholding and withdrawal of treatments. Ninety-five percent of intensivists agreed with the "Principle of Double Effect" (i.e. adding analgesia and or sedation to patients after the withholding/withdrawal decisions in order to prevent their suffering and allow their comfort, even though it might hasten the dying process). The main withheld therapies were vasopressors, respiratory assistance and CPR. Most of the respondents reported the decision was often to always multidisciplinary (92%), involving the family (68%), and the patient (65%), or his advance directives (77%) or his surrogate (81%) and the nurses (78%). The interviewees agreed there was a law governing withholding and withdrawal decisions/practices in Lebanon. Christians and Muslim Sunni leaders declared accepting those practices (withholding or withdrawing LSTs from patients when appropriate).
CONCLUSION: Withholding and withdrawal of LSTs in the ICU are known concepts among intensivists working in Lebanon and are being practiced. Our results could be used to inform and optimize therapeutic limitation in ICUs in the country.
This study focuses on the impact of common spiritual beliefs regarding metaphysical questions in agreeability with the practice of hastened death. A sample of 497 Portuguese medical students was collected. Differences between genders and religions, predictors for agreeability with hastened death and the association between spiritual beliefs and opinion towards hastened death cases were assessed. Respondents were mostly favourable to the practice of hastened death. Formal religious affiliation and higher levels of religiosity significantly associated with lesser agreeability with hastened death. Statistically significant association was found between every hastened death scenario and multiple of the spiritual beliefs used. A number of spiritual beliefs were predictors of agreeability. We discuss the implications of religion and spirituality in agreeability with hastened death. Further research is required to better understand the true weight of spirituality in one's opinion towards this ethical dilemma.
The concept of death anxiety is expected of older persons as they age and are nearing their end-of-life. This study examined the relationship between religiosity, spirituality, and death anxiety among Filipino older adults. A convenience sample of 125 Filipino older adults were recruited in the study. Data were collected using the Spirituality Scale, Revised Death Anxiety Scale, and Dimensions of Religiosity Scale. Results of the study revealed that spirituality (r=-0.168, p = 0.061) and religiosity (r=-0.044, p = 0.623) had an inverse relationship with death anxiety. However, even with the inverse relationship, spirituality and religiosity were not significantly correlated with death anxiety, although participants were well aware of the importance of these concepts on their lives. It is suggested that assessing spirituality and religiosity of this age group can inform nurses to engage in quality nursing practice, by affirming the vulnerability, and preserving the personhood of older persons as they near their end-of-life.
BACKGROUND: African American (AA) church leaders often advise AAs with serious and life-limiting illnesses (LLIs).
OBJECTIVES: 1) determine beliefs of AA church leaders about palliative care and hospice care (PCHC), 2) assess association of participants' attitude about encouraging a loved one to learn about PCHC with whether PC or HC is consistent with faith beliefs and can reduce suffering and bring comfort, and 3) evaluate an interactive, educational intervention.
DESIGN: prospective, one group, pre and post assessment of beliefs and attitudes
Settings/Subjects: 100 church leaders from 3 AA Churches and one AA Church Consortium.
RESULTS: At baseline, participants held more receptive beliefs about HC than about PC. Those who reported knowing the meaning of PC believed PC is consistent with their faith (81% vs 28%, phi=.53) and can reduce suffering and bring comfort (86% vs 38%, phi =.50). Participants who believed PC was consistent with their faith were more likely to encourage a loved one with a LLI to learn about PCHC than did participants who did not (100% vs 77%, phi =.39, p < 0.001). Post intervention, more participants: 1) perceived that they knew the meaning of PC (48% vs 96%), 2) viewed PC as consistent with their faith (58% vs. 94%), and 3) viewed PC as a means to reduce suffering and bring comfort (67% vs 93%) with a p < 0.0001 for each item. The post intervention results for HC were variable.
CONCLUSIONS: Faith beliefs of AA Church leaders may be aligned with the principles of PCHC.
In the Western world including Canada, grievous and irredeemable health conditions, which cause unbearable suffering, has given support to the legalization of medical aid in dying (MAiD). It is unknown how Asian Buddhists who are in contact with the Western culture perceive MAiD. In this qualitative study, 16 Asian Buddhists living in Montreal took part in a semi-structured interview. Contrary to general findings in the literature, religious affiliation do not always determine moral stances and practical decisions when it comes to MAiD. Some participants were willing to take some freedom with the doctrine and based their approval of MAiD on the right to self-determination. Those who disapproved the use of MAiD perceived it as causing unnatural death, creating bad karma, and interfering with a conscious death. End-of-life (EoL) care providers have to remain sensitive to each patient's spiritual principles and beliefs to understand their needs and choices for EoL care.
The timing of palliative care initiation may be more appropriately directed using a needs-based approach, instead of a prognostically driven one. Jewish Law or Halachah ("the way") upholds a strong commitment to the sanctity of life and teaches that the duty to prolong life supersedes the duty to end suffering prematurely, unless one is expected to imminently die. This intersection of palliative care and a reliance on prognostic triggers with an individual's observance of religious traditions complicates matters nearing the end-of-life. A recent pilot study by Sternberg et al. of 20 patients with advanced dementia in Israel found that home hospice care significantly reduced distressing symptoms, caregiver burden and hospitalization and teaches us important lessons about some of the essential elements to providing excellent palliative care at home, including the 24/7 availability of healthcare providers outside of the emergency department. In light of specific religious practices, palliative care should strive to incorporate a patient's specific religious observance as part of high-quality end-of-life care.
Les soins palliatifs demandent de plus en plus de compétences médicales, soignantes, humaines et éthiques, afin d’asseoir leur légitimité dans des domaines de plus en plus pointus de la médecine – réanimation, néonatalogie, cancérologie, gériatrie – ainsi que dans la diversité des prises en charge, y compris au domicile ou en EPHAD.
Dans ce contexte de développement des formations et d’élargissement des champs de compétences de la pratique palliative, cette 5e édition du manuel offre :
-les indispensables connaissances thérapeutiques ;
-les outils, à destination des professionnels en vue d’acquérir une compétence clinique pour la rencontre et l’accompagnement humain, psychique et relationnelle de la personne malade ;
-une contextualisation de la pratique des soins palliatifs dans leur dimension sociale, sanitaire et politique ;
-des jalons pédagogiques pour le développement des soins palliatifs dans leur dimension pédagogique et de recherche.
Après avoir vécu une expérience au seuil de la mort, l’auteure, religieuse du Sacré Coeur de Jésus, consacre une partie de son temps à écouter les personnes sur le point de mourir et à les accompagner. Elle témoigne de ces rencontres, qui, au-delà de leur variété, expriment la possibilité d’accomplir son existence, dans cette période finale, à condition d’en accepter les lumières et les ténèbres.
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.