MIse en contexte : la sédation palliative continue (SPC) suscite plusieurs questionnements. Les attitudes, connaissances et représentations de la population générale, susceptible de bénéficier de cette intervention, ne semblent pas faire l'objet de revues autrement que sous l'angle de l'expérience des proches des patients ayant reçu une SPC.
Objectif : recenser et analyser les études faisant état des attitudes, connaissances et représentations de la population générale par rapport SPC.
Méthodologie : une recension des écrits inspirée de la méthodologie scoping review a été réalisée. Une analyse orientée par les trois variables d'intérêts a permis la synthèse des données quantitatives portant sur les attitudes, ainsi qu'une analyse thématique inductive et itérative des données qualitatives issues des huits articles retenus.
Résultats : les attitudes de la population générale relatives à la SPC sont partagées, étant jugées acceptables par 25% à 81 % des répondants. Il apparaît que la SPC est reconnue de plusieurs et est associée à une pratique euthanasique pour d'autres. Les représentations de la population ont, entre autres, trait aux aspects techniques liées à l'intervention, et renvoient à des constructions symboliques antithétiques.
Conclusion : l'exploration de l'influence d'une définition claire, et exempte d'euphémisme, du concept de SPC sur les attitudes du public semble pertinente. D'autres études sont nécessaires afin de rendre compte des connaissances de la population au regard des aspects terminologique, légal et conceptuel entourant la SPC, ainsi que pour déterminer et démystifier l'objet de la confusion observée entre l'euthanasie et la SPC.
This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
The goal of this work is to assess the beliefs of US physicians about the national legalization of physician-assisted suicide (PAS). We sent a survey to 1000 randomly chosen physicians from around the US. Our survey indicates that 60% of physicians thought PAS should be legal, and of that 60%, 13% answered "yes" when asked if they would perform the practice if it were legal. Next, 49% of physicians agreed that most patients who seek PAS do so because of pain, and 58% agreed that the current safeguards in place for PAS, in general, are adequate to protect patients. With respect to specific safeguards, 60% disagreed with the statement that physicians who are not psychiatrists are adequately trained to screen for depression in patients seeking PAS, and 60% disagreed with the idea that physicians can predict with certainty whether a patient seeking PAS has 6 months or less to live. Finally, about one-third (30%) of physicians thought that the legalization of PAS would lead to the legalization of euthanasia, and 46% agreed that insurance companies would preferentially cover PAS over possible life-saving treatments if PAS was legalized nationally. Our survey results suggest several conclusions about physicians' beliefs about PAS. The first is that there is a discrepancy between willingness to endorse and willingness to practice PAS. Second, physicians are generally misinformed with regard to why patients seek PAS, and they are uncertain about the adequacy of safeguards. Third, physicians are still wary of the slippery slope with respect to the legalization of PAS nationwide.
Background: Medical Assistance in Dying (MAID) in Canada came into effect in 2016 with the passing of Bill C-14. As patient interest and requests for MAID continue to evolve in Canada, it is important to understand the attitudes of future providers and the factors that may influence their participation. Attitudes towards physician hastened death (PHD) in general and the specific provision of MAID (e.g., causing death by lethal prescription or injection) are unknown among Canadian residents. This study examined residents’ attitudes towards PHD and MAID, and identified factors (e.g., demographics, clinical exposure to death and dying) that may influence their decision to participate in PHD and provide MAID.
Methods: A cross-sectional survey was adapted from prior established surveys on MAID to reflect the Canadian setting. All Canadian family medicine programs were invited to participate. The survey was distributed between December 2016 and April 2017. Analysis of the results included descriptive statistics to characterize the survey participants and multivariable logistic regressions to identify factors that may influence residents’ attitudes towards PHD and MAID.
Results: Overall, 247 residents from 6 family medicine training programs in Canada participated (response rate of 27%). While residents were most willing to participate in treatment withdrawal (52%), active participation in PHD (41%) and MAID by prescription of a lethal drug (31%) and lethal injection (24%) were less acceptable. Logistic regressions identified religion as a consistent and significant factor impacting residents’ willingness to participate in PHD and MAID. Residents who were not strictly practicing a religion were more likely to be willing to participate in PHD (OR = 17.38, p < 0.001) and MAID (lethal drug OR = 10.55, p < 0.01, lethal injection OR = 8.54, p < 0.05). Increased clinical exposure to death and dying crudely correlated with increased willingness to participate in PHD and MAID, but when examined in multivariable models, only a few activities (e.g., declaring death, completing a death certificate) had a statistically significant association. Other significant factors included the residents’ sex and location of training.
Conclusions: Residents are hesitant to provide MAID themselves, with religious faith being a major factor impacting their decision.
Objective: The completion rates of advance treatment preferences in patients with hematologic malignancies are low. To improve these rates, the modifiable factors associated with completion need to be determined. This study aimed to examine the associations of patient attitudes toward, and knowledge about, advance directives (ADs) with the patient–caregiver dyadic completion of advance treatment directive surveys.
Methods: Using a nonexperimental correlational design, 44 patient–caregiver dyads completed the questionnaires, including a Korean-Advance Directive model. Cohen's kappa coefficient and multiple logistic regression analyses examined the extent of dyadic agreement and patient factors for the dyadic completion of the advance treatment directive survey, respectively.
Results: A minor group of patients (4.5%–11.4%) and caregivers (11.4%–18.2%) preferred aggressive end-of-life treatments, whereas more patients (47.7%) and caregivers (68.2%) supported hospice care. The only significant patient–caregiver dyadic concordance on treatment directives was for chemotherapy with a moderately high agreement (kappa = 0.60: 95% CI: 2.51–3.73). One score increase in AD knowledge and having a history of hematopoietic stem cell transplant (HSCT) increased the likelihood of dyadic completion of the treatment directive survey by 43% (p = 0.039) and 917% (p = 0.047), respectively.
Conclusions: The patient–caregiver dyads in the setting of hematologic malignancy had a moderately high concordance with chemotherapy but were not associated with other treatment options. A higher level of AD knowledge and HSCT were associated with dyadic completion of the AD survey. Educational support is important to increase knowledge regarding ADs through ongoing palliative discussions among hematologic patients and their caregivers.
This study aims to investigate the relationship between death anxiety of the Turkish nurses and their attitudes toward the dying patient. This study involved 203 nurses who were working at a university hospital. The data were collected using “Nurse Information Form” (which was prepared by the authors of this research), “Thorson-Powell Death Anxiety Scale,” and “Attitude Scale about Euthanasia, Death, and Dying Patient.” There was a positive correlation between death anxiety and dying patient avoidance behavior and euthanasia score (p < .05). The findings showed that nurses, death anxiety, and death scores were high in the loss of a close relatives (p < .05). Our findings suggest that the situation of the dying patients and their families and also nurses should be improved. Thus, special psychological education/training should be given to the nurses to deal with death anxiety and their attitude to the dying patient.
CONTEXT: Advances in medicine have seen changes in mortality in Western countries. Simultaneously, countries such as Australia, Canada, USA, New Zealand, the United Kingdom and Germany have encouraged consumer-directed care and Advance Care Plan (ACP) completion, giving patients a voice despite incapacity. Adhering to ACPs relies on the decision-making of treating doctors, making hospital doctors key partners, and their perspectives on ACP adherence critical.
OBJECTIVES: The aim of this review was to explore and map existing research on factors associated with hospital doctors adhering to adult patients' ACPs.
METHODS: A scoping review of English language publications within CINAHL, Emcare, Medline, PsycInfo and Scopus was conducted, following PRISMA Extension for Scoping Reviews (PRISMA-ScR) guidelines. ACPs were defined as adult patient-generated, written health care directions or values statements. Studies of any design, which reported original research associated with hospital doctors adhering to ACPs were included.
RESULTS: Twenty-seven publications were included in the final analysis. Results suggested ACPs were thought potentially useful, however, adherence has been associated with doctors': attributes (e.g. specialty, seniority), attitudes towards ACP (e.g. applicability), and legal knowledge.
CONCLUSION: Current literature suggests doctors' hold largely positive attitudes towards ACPs that provide useful patient information that enables doctors to make appropriate treatment decisions. Doctors often perceive limitations to ACP applicability due to legal requirements or ambiguity of patient outcome goals.
Background: This study aimed to investigate lung cancer patients and attitudes of their caregivers toward advance directives (ADs) in China.
Methods: A cross sectional study was conducted in the Department of Oncology outpatient clinic in West China Hospital, Sichuan University. A questionnaire was used to survey the attitudes of lung cancer patients and caregivers toward ADs.
Results: A total of 148 lung cancer patients and 149 caregivers were enrolled into the study. Of these, 94.6% and 89.9% of patients and caregivers had not heard of AD and none of those in the study had ever signed an AD. A total of 79.7% patients and 75.2% caregivers were willing to sign ADs after they were provided with information. Patients who preferred the end of life period to sign ADs were 5.4 times more likely to have ADs than patients who chose to sign ADs when their disease was diagnosed (P < 0.05, 95%CI [1.27–22.93]). Caregivers who were reluctant to undergo chemotherapy when diagnosed with cancer were 2.16 times more likely to sign ADs than those willing to receive chemotherapy (P < 0.05, 95%CI [1.20–3.90]).
Conclusions: In China, lung cancer patients and their caregivers showed lack of knowledge about ADs, and the completion rate of ADs was extremely low. However, participants were positive about ADs and public education on ADs may help to increase the completion rate of ADs in China.
To describe the knowledge and attitude of Chinese patients with advanced cancer towards advanced care planning (ACP), a convenience sample of 275 patients with advanced cancer was recruited from a tertiary cancer hospital in Beijing, China, between February and December 2017. The multi-item questionnaire focused on patients’ demographics, disease characteristics and knowledge about and attitude towards ACP and was administered to eligible patients. Descriptive statistics were performed. Most patients had never heard about ACP (82.2%) and had never talked about ACP (83.0%), but only a few (18.3%) were not willing to talk about ACP. A total of 67.8% patients chose to refuse resuscitation attempts or life-sustaining medical interventions, and 70.8% of patients hoped to have surrogate decision makers when they became unconscious. By binary logistic regression analysis, patients who were of greater age, female and living in urban areas preferred to refuse resuscitation attempts or life-sustaining medical interventions (OR = 1.023, P = 0.042; OR = 2.011, P = 0.020; OR = 0.254, P < 0.01); patients who had very rich or rich family economic status preferred to involve surrogate decision makers compared with patients of very poor family economic status (OR = 0.250, P = 0.011). There is a large gap between the knowledge about ACP and the expectation of implementing ACP in Chinese patients with advanced cancer. To develop culturally appropriate and individualized programmes to promote knowledge and implementation in practice of ACP among Chinese patients with advanced cancer and their relatives is still a significant challenge.
Background: Evidence supporting early palliative care is based on trials of specialised palliative care, but a more sustainable model might involve mainly primary providers.
Aim: The aim of this study was to compare the characteristics of physicians providing primary and specialised palliative care, their attitudes towards early palliative care and their perception of having sufficient resources for its provision.
Design: Survey distributed by mail and e-mail. Specialised providers were defined as both receiving palliative care referrals from other physicians and not providing palliative care only for their own patients.
Setting/participants: A total of 531 physicians providing palliative care in Canada (71% participation) participated in the study.
Results: Of the participants, 257 (48.4%) provided specialised and 274 (51.6%) primary care. Specialists were more likely to have palliative care training (71.8% vs 35.2%), work in urban areas (94.1% vs 75.6%), academic centres (47.8% vs 26.0%) and on teams (82.4% vs 16.8%), and to provide mainly cancer care (84.4% vs 65.1%) (all p < 0.001). Despite strongly favouring early palliative care, only half in each group agreed they had resources to deliver it; agreement was stronger among family physicians, those working on teams and those with greater availability of community and psychosocial support. Primary providers were more likely to agree that renaming the specialty ‘supportive care’ would increase patient comfort with early palliative care referral (47.4% vs 35.5%, p < 0.001).
Conclusion: Despite strongly favouring the concept, both specialists and primary providers lack resources to deliver early palliative care; its provision may be facilitated by team-based care with appropriate support. Opinions differ regarding the value of renaming palliative care.
Objectives: Prevalence rates of death by euthanasia (EUT) and physician-assisted suicide (PAS) have increased among older adults, and public debates on these practices are still taking place. In this context, it seemed important to conduct a systematic review of the predictors (demographic, physical health, psychological, social, quality of life, religious, or existential) associated with attitudes toward, wishes and requests for, as well as death by EUT/PAS among individuals aged 60 years and over.
Method: The search for quantitative studies in PsycINFO and MEDLINE databases was conducted three times from February 2016 until April 2018. Articles of probable relevance (n = 327) were assessed for eligibility. Studies that only presented descriptive data (n = 306) were excluded.
Results: This review identified 21 studies with predictive analyses, but in only 4 did older adults face actual end-of-life decisions. Most studies (17) investigated attitudes toward EUT/PAS (9 through hypothetical scenarios). Younger age, lower religiosity, higher education, and higher socio-economic status were the most consistent predictors of endorsement of EUT/PAS. Findings were heterogeneous with regard to physical health, psychological, and social factors. Findings were difficult to compare across studies because of the variety of sample characteristics and outcomes measures.
Conclusion: Future studies should adopt common and explicit definitions of EUT/PAS, as well as research designs (e.g. mixed longitudinal) that allow for better consideration of personal, social, and cultural factors, and their interplay, on EUT/PAS decisions.
Background: A significant number of newborns are affected by life-limiting or life-threatening conditions. Despite this prevalence, there are inconsistencies in attitudes toward, and delivery of, neonatal palliative care. Implementing neonatal palliative care practice requires a multidisciplinary, collaborative effort.
Objective: To examine institutional and individual barriers to and facilitators of neonatal palliative care from both medical and nursing perspectives.
Design/Setting/Subjects: A prospective cross-sectional study design was used to collect data using the Neonatal Palliative Care Attitude Scale (NiPCAS) survey from medical providers and nurses in a 64-bed level IV neonatal intensive care unit in the United States. The response rate was 67%.
Measurements: The NiPCAS survey included 26 attitudinal questions on a Likert scale. The instrument included three subscales: organization, resources, and clinician, in addition to other questions.
Results: Six facilitators to neonatal palliative care were identified: (1) support of palliative care by the health care team, (2) support of palliative care by medical and nursing practice, (3) agreement that palliative care is as important as curative care, (4) parental involvement in decision making, (5) recognition of the importance of palliative care education, and (6) prioritizing pain relief. Three barriers to neonatal palliative care were highlighted: (1) a physical environment that is not conducive to providing palliative care, (2) technological obligations and parental demands, and (3) the societal belief that babies should not die. In addition, there were differences between medical and nursing staffs' attitudes on several topics.
Conclusions: Several facilitators and barriers of neonatal palliative care were identified. There were similarities and differences in perceptions of neonatal palliative care between medical and nursing staff. Future work should be done to strengthen facilitators and to mitigate barriers.
Background: Palliative care is predominantly accessed late in the course of an illness, despite evidence to suggest the benefits of early engagement. Strategies are required to reduce the barriers to the delivery of palliative care.
Aim: To describe community understandings of and attitudes to palliative care and explore characteristics significantly associated with favourable attitudes towards palliative care.
Design: Cross-sectional survey data were collected including several sociodemographic characteristics, knowledge of palliative care and attitudes to palliative care. Correlational analyses identified factors related to positive attitudes to palliative care. Those of significance (p <=0.01) were examined using a multiple regression model to determine their predictive value.
Setting/participants: A community-based sample of consecutive English-speaking adults who volunteered their participation in response to a study advertisement distributed online through established community groups.
Results: A total of 421 participants (75% female, mean age: 51 ± 15.1) reported a median of at least three misperceptions of palliative care. Older age, previously undertaking a caregiving role, knowing someone who had received palliative care and reporting more accurate knowledge of palliative care significantly predicted favourable attitudes to palliative care (adjusted R2 = 0.24, F(8, 333) = 13.2, p < 0.001). Other factors typically associated with health literacy such as tertiary education, working at a medical facility and speaking a language other than English at home were not predictive.
Conclusion: Gaps in knowledge about palliative care exist in community, which may limit citizen’s potential access to quality care in the event of serious illness. These results point to a role for public education programmes, which may, in turn, also shift attitudes to palliative care.
Objective: The aim of this study was to identify the challenges anticipated by clinical staff in two Melbourne health services in relation to the legalisation of voluntary assisted dying in Victoria, Australia.
Methods: A qualitative approach was used to investigate perceived challenges for clinicians. Data were collected after the law had passed but before the start date for voluntary assisted dying in Victoria. This work is part of a larger mixed-methods anonymous online survey about Victorian clinicians' views on voluntary assisted dying. Five open-ended questions were included in order to gather text data from a large number of clinicians in diverse roles. Participants included medical, nursing and allied health staff from two services, one a metropolitan tertiary referral health service (Service 1) and the other a major metropolitan health service (Service 2). The data were analysed thematically using qualitative description.
Results: In all, 1086 staff provided responses to one or more qualitative questions: 774 from Service 1 and 312 from Service 2. Clinicians anticipated a range of challenges, which included burdens for staff, such as emotional toll, workload and increased conflict with colleagues, patients and families. Challenges regarding organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and how voluntary assisted dying would fit within the hospital's overall work were also raised.
Conclusions: The legalisation of voluntary assisted dying is anticipated to create a range of challenges for all types of clinicians in the hospital setting. Clinicians identified challenges both at the individual and system levels.What is known about the topic? Voluntary assisted dying became legal in Victoria on 19 June 2019 under the Voluntary Assisted Dying Act 2017. However there has been little Victorian data to inform implementation.What does this paper add? Victorian hospital clinicians anticipate challenges at the individual and system levels, and across all clinical disciplines. These challenges include increased conflict, emotional burden and workload. Clinicians report concerns about organisational culture, the logistics of delivering voluntary assisted dying under the specific Victorian law and effects on hospitals' overall work. What are the implications for practitioners? Careful attention to the breadth of staff affected, alongside appropriate resourcing, will be needed to support clinicians in the context of this legislative change.
OBJECTIVE: To analyse the level of knowledge and attitudes concerning living wills of nurses working in 3 hospitals of Servizo Galego de Saúde (Spain).
METHOD: Descriptive, cross-sectional, multi-centre study. Stratified sampling was carried out with nurses from the University Hospital Complexes of Ourense, Ferrol and Vigo. A sample size of 239 individuals was calculated. The data was collected during the first semester of 2018 using a validated self-administered questionnaire («Cuestionario de conocimientos y actitudes de los profesionales sanitarios en el proceso de declaración de voluntades vitales»).
RESULTS: A total of 262 nurses participated. Fifty percent believe that health professionals are obliged to inform about living wills. Two percent consider that they have enough information on the subject, and this is demonstrated in the knowledge questions, where between 61%-93% fail in the questions related to the documentation, use, and their legal aspects. Eighty-four percent consider that they have the obligation to uphold the values and beliefs of patients, and 89% that patients have the right to receive and decide on the right care. Thirteen percent consider that patients are not well informed about living wills, and 83% would recommend to chronic patients that they complete a living will.
CONCLUSIONS: Nurses have a great lack of knowledge about the legal aspects and the use of living wills, which makes them feel unable to inform their patients about them. Despite of the lack of knowledge, their attitude is positive and most of them state that they would recommend them to their patients.
BACKGROUND: Assisted dying is illegal in Norway, but a majority of the population is in favour of legalisation. Doctors’ attitudes to assisted dying were last investigated in 1993. Have their attitudes changed?
MATERIAL AND METHOD: two surveys undertaken among representative panel of practising doctors of the Institute for Studies of the Medical Profession in 2014 and 2016, respectively, included questions about assisted dying. The responses were analysed with the aid of descriptive statistics and logistic regression.
RESULTS: The response rates were 75.0 % (2014) and 73.1 % (2016). The majority was opposed to legalisation of assisted dying. In the 2016 survey, 9.1 % of the respondents reported to ‘strongly agree’ or ‘partially agree’ that physician-assisted suicide should be made legal for persons who suffer from ‘a fatal disease with short remaining life expectancy’. Younger and non-religious respondents took a positive view of legalisation more frequently than others. In the 2014 survey, 8.6 % of the respondents reported that they would be willing to provide physician-assisted suicide should it be made legal.
INTERPRETATION: As in 1993, a majority of Norwegian doctors were opposed to assisted dying, but now there seem to be more doctors than previously in favour of legalisation in certain cases. Only very few would be willing to provide assisted dying themselves in the event that it should it become permissible.
BACKGROUND AND PURPOSE: This study aimed to examine the psychometric properties of the Revised Death Attitude Profile (DAP-R) in a sample of Greek nurses and nursing students.
METHODS: A convenience sample (n = 934) was used from six National Health System hospitals, and two University Schools of Nursing in central and northern Greece completed the Greek version of the DAP-R (Gr-DAP-R).
RESULTS: Principal component analysis with varimax rotation revealed a six-factor solution, including approach acceptance, death avoidance, escape acceptance, neutral acceptance, fear of death, and after death concerns. The internal consistency for each of the subscales ranged from 0.64 to 0.88. Intercorrelations between the Gr-DAP-R subscales supported the relative independence of death attitudes dimensions.
CONCLUSIONS: The Gr-DAP-R can be used as a research and clinical tool in assessing death attitudes among Greek nurses.
Background: Advance directives have been established as a legal document that ensures patients' wishes are followed if/when they cannot make medical decisions for themselves. The concept, advance directive, is rooted in the ethical principle of patient's autonomy. New York State recognizes three types of advance directives: New York State Health Care Proxy, Living Wills, and Do Not Resuscitate (DNR) order. A common misnomer in healthcare is the idea that advance directives are for the elderly or patients with terminal illness. As per New York State statutes, everyone older than 18-years-old should have an advance directive to avoid conflicts in times of crisis. It has been shown that most patients believe it is their physician's responsibility to initiate an advance directive discussion and residents are at the forefront of most health facilities.
Objective: To assess the knowledge and attitude of internal medicine residents towards advance directive and to improve residents' skills and confidence on advance directive discussion.
Design: We carried out a prospective study to assess the knowledge and attitude of the internal medicine residents towards advance directive to validate the need to implement didactic sessions and simulations. Results: Fifty out of the 75 internal medicine residents of Harlem Hospital Center participated in the study. Most of the responders indicated that they lacked sufficient knowledge in advance directive discussion and indicated that they were interested in didactic sessions and simulations related to how to help patients with advance directives.
Conclusion: Our study showed that most of the residents lacked sufficient knowledge in advance directives discussions and the importance of its incorporation into residency training education.
BACKGROUND: Palliative and end-of-life care is a core competency for doctors and is increasingly recognised as a key clinical skill for junior doctors. There is a growing international movement to embed palliative care education in medical student and junior doctor education. To date there has been no review of the literature concerning the views and experiences of junior doctors delivering this care.
AIM: To review the published literature between 2000 and 2019 concerning junior doctors' experience of palliative and end-of-life care.
METHODS: Systematic literature review and narrative synthesis.
RESULTS: A search of six databases identified 7191 titles; 34 papers met the inclusion criteria, with a further 5 identified from reference searching. Data were extracted into a review-specific extraction sheet and a narrative synthesis undertaken. Three key themes were identified: (1) 'Significance of death and dying': all papers found that junior doctors care for many patients approaching the end of life, and this often causes emotional distress and can leave persisting memories for many years afterwards; (2) 'Thrown in at the deep end': junior doctors feel unprepared and unsupported in providing palliative and end-of-life care; and (3) 'Addressing the gaps': junior doctors often experience a medical culture of disengagement towards dying patients and varying attitudes of senior doctors. Subsequently they have to learn the skills needed through seeking their own opportunities.
CONCLUSION: Medical education needs to change in order to better prepare and support junior doctors for their role in caring for dying patients. This education needs to focus on their knowledge, skills and attitudes.