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.
OBJECTIVE: Knowledge about how people make meaning in cancer, palliative, and end-of-life care is particularly lacking in Africa, yet it can provide insights into strategies for improving palliative care (PC). This study explored ways in which cancer patients, their families, and health care professionals (HCPs) construct meaning of their life-limiting illnesses and how this impact on provision and use of PC in a Nigerian hospital.
METHODS: This ethnographic study utilised participant observation, informal conversations during observation, and interviews to gather data from 39 participants, comprising service users and HCPs in a Nigerian hospital. Data were analysed using Spradley's framework for ethnographic data analysis.
RESULTS: Meaning-making in life-limiting illness was predominantly rooted in belief systems. Most patients and their families, including some HCPs, perceived that cancer was caused by the devil, mystical, or supernatural beings. They professed that these agents manifested in the form of either spiritual attacks or that wicked people in society used either poison or acted as witches/wizards to inflict cancer on someone. These beliefs contributed to either nonacceptance of, or late presentation for, PC by most of patients and their families, while some professionals depended on supernatural powers for divine intervention and tacitly supporting religious practices to achieve healing/cure.
CONCLUSIONS: Findings revealed that cultural and religious world views about life-limiting illnesses were used in decision-making process for PC. This, therefore, provided evidence that could improve the clinicians' cultural competence when providing PC to individuals of African descent, especially Nigerians, both in Nigerian societies and in foreign countries.
Le chat d'Emma tue une mésange. Son ami, Jules Monsieur-Je-sais-tout, lui explique tout ce qu'il faut savoir sur le mystère de la mort dans touts les civilisations, les religions mais aussi les différents rites après la mort et notre condition d'être humain sur terre.
Ce magnifique album sous forme de bande dessinée explique, avec des mots simples et de sympathiques dessins, ce que doivent savoir les enfants sur le mystère de la mort.
Religion and culture play important roles in influencing end-of-life communication among the elderly. However, little is known about end-of-life communication among elderly nursing home residents. A qualitative study involving a sample of 13 elderly residents of a non- government nursing home in the north of Peninsular Malaysia was conducted to investigate residents' attitudes and ideas about their end-of-life preferences. Thematic analysis was performed to identify major themes emerging from the interviews. This study found that elderly residents actively avoided end-of-life communication, but that their cultural and religious beliefs remained of paramount importance. It is hoped that these findings will provide a platform upon which to improve current nursing home care in Malaysia.
This study examines the impact of the level of religious observance on the attitudes toward end-of-life (EOL) decisions and euthanasia of Jews in Israel-where euthanasia is illegal-as compared to Jews living in the USA, in the states where euthanasia is legal. A self-reporting questionnaire on religiosity and personal beliefs and attitudes regarding EOL care and euthanasia was distributed, using a convenience sample of 271 participants from Israel and the USA. Findings show that significant differences were found in attitudes between Jews of different levels of religious observance with respect to patient autonomy, right to die with dignity, and dying in familiar and supportive surroundings. The USA and Israeli Jews have similar knowledge regarding EOL care and expressed similar attitudes and perceptions toward the issues of authority of medical staff and religious figures and patient's autonomy. Findings indicate that the level of religious observance has more potency in shaping their attitudes and perceptions of EOL decisions than the state law. We conclude by discussing the implications of our findings with regard to multicultural health systems and providing practical recommendations.
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.
BACKGROUND: News of cancer progression is critical to setting accurate prognostic understanding, which guides patients' treatment decision making. This study examines whether religious belief in miracles modifies the effect of receiving news of cancer progression on change in prognostic understanding.
METHODS: In a multisite, prospective cohort study, 158 patients with advanced cancer, whom oncologists expected to die within 6 months, were assessed before and after the visit at which scan results were discussed. Before the visit, religious belief in miracles was assessed; after the visit, patients indicated what scan results they had received (cancer was worse vs cancer was stable, better, or other). Before and after the visit, prognostic understanding was assessed, and a change score was computed.
RESULTS: Approximately 78% of the participants (n = 123) reported at least some belief in miracles, with almost half (n = 73) endorsing the strongest possible belief. A significant interaction effect emerged between receiving news of cancer progression and belief in miracles in predicting change in prognostic understanding (b = -0.18, P = .04). Receiving news of cancer progression was associated with improvement in the accuracy of prognostic understanding among patients with weak belief in miracles (b = 0.67, P = .007); however, among patients with moderate to strong belief in miracles, news of cancer progression was unrelated to change in prognostic understanding (b = 0.08, P = .64).
CONCLUSIONS: Religious belief in miracles was highly prevalent and diminished the impact of receiving news of cancer progression on prognostic understanding. Assessing patients' beliefs in miracles may help to optimize the effectiveness of "bad news" scan result discussions.