Continuous palliative sedation until death: a qualitative study of palliative care clinicians' experiences.

BACKGROUND: The practice of continuous palliative sedation until death is the subject of much medical and ethical debate, which is reflected in the inconsistency that persists in the literature regarding the definition and indications of palliative sedation. AIM: This study aims to gain a better understanding of palliative care clinicians' experiences with continuous palliative sedation. DESIGN: We conducted a qualitative study based on focus group discussions. SETTING/PARTICIPANTS: We conducted six focus groups with a total of 28 palliative care clinicians (i.e., 15 nurses, 12 physicians, and 1 end-of-life doula) from diverse care settings across Canada, where assisted dying has recently been legalized. RESULTS: An interpretative phenomenological analysis was used to consolidate the data into six key themes: responding to suffering; grappling with uncertainty; adapting care to ensure ongoing quality; grounding clinical practice in ethics; combining medical expertise, relational tact, and reflexivity; and offering an alternative to assisted death. CONCLUSIONS: Interaction with the patient's family, uncertainty about the patient's prognosis, the concurrent practice of assisted dying, and the treatment of existential suffering influence the quality of sedation and indicate a lack of clear palliative care guidelines. Nevertheless, clinicians exhibit a reflective and adaptive capacity that can facilitate good practice.

How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.

Background: Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities. Objectives: The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities. Research Approach and Design: We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts. Methods and Analysis: Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context. Ethic: This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). Discussion: Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

A systematic review of older adults' request for or attitude toward euthanasia or assisted-suicide.

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.

Information needs of francophone health care professionals and the public with regard to medical assistance in dying in Quebec: a qualitative study.

BACKGROUND: In 2016, the Canadian government legalized medical assistance in dying (MAiD) for adults with terminal illness. The objective of this study was to explore the information needs of health care professionals and members of the public regarding MAiD. METHODS: This was a qualitative study involving a 1-day face-to-face forum followed by a 3-week online forum across the province of Quebec conducted in June 2016. French-speaking participants targeted for the study included members of the public (citizens, patients and caregivers) and health care professionals. Participants were recruited through calls for applications to a patient partner network and via social media, and through mailing lists of partner professional and community organizations across Quebec. We used a purposeful sampling strategy to recruit a diverse group of participants. In the forums, deliberations were prompted by short informational videos about MAiD. We performed a thematic analysis to identify key information needs. RESULTS: Fifty members of the public and 35 health care professionals participated. Forty-three people participated in the face-to-face meeting, and 42 people participated online. Participants identified 32 information needs (22 expressed by both members of the public and health care professionals, and 10 specific to members of the public) regarding the definition of MAiD, eligibility criteria, and documenting and evaluating practices. Information needs varied along different stages of the patient's journey. Participants expressed the need to be informed about issues that go beyond the medical and legal aspects of MAiD (e.g., relational, symbolic, psychological and spiritual aspects). INTERPRETATION: The findings show that health care professionals and members of the public have common information needs regarding MAiD and seek information on the relational, emotional and symbolic aspects of this practice. These findings call for concerted efforts to build a common information base - covering dimensions that go beyond the medical and legal aspects of MAiD - to facilitate informed conversations among patients, health care professionals and members of the public.

Advance Care Planning for Mechanical Ventilation: A Qualitative Study on Health-Care Providers' Approaches to Cross-Cultural Care.

Advance care planning (ACP) is a method used for patients to express in advance their preferences for life-sustaining treatments at the end of life. With growing ethnocultural diversity in Canada, health-care providers are managing an increasing number of diverse beliefs and values that are commonly associated with preferences for intensive mechanical ventilation (MV) treatment at the end of life. This study aimed to identify and describe the approaches used by health-care providers to set advance care plans for MV with seriously ill patients from diverse ethnocultural backgrounds. Semistructured interviews were conducted with health-care providers from acute-care settings. Using a value-based approach in ACP was deemed an effective method of practice for managing and interpreting diverse beliefs and values that impact decisions for MV. However, personnel, organizational, and systemic barriers that exist continue to hinder the provision of ACP across cultures.

[Barriers to and facilitators for using a risk assessment tool to prevent violent behaviour in patients with mental health conditions: Perspectives of health care providers]. / Les obstacles et les facilitateurs à l'utilisation de l'évaluation du risque de violence auprès des personnes ayant des troubles mentaux : perceptions du personnel soignant.

Regular assessment of risk of violence is shown to be effective in reducing violence in mental health services. PURPOSE: To evaluate health care providers' use of a violence risk assessment tool on a mental health unit and the facilitators for and barriers to its use. METHODS: A descriptive study using the Dillman approach and informed by the Knowledge to Action framework was conducted. RESULTS: Twenty-six health care providers responded to the survey; 62% reported using the violence risk assessment tool available on their unit, but not on a daily basis. Common barriers were lack of knowledge of the tool, lack of resources and time, and negative attitudes toward patients. 42% of participants indicated the need for further training on violence risk assessment. CONCLUSION: Despite high exposure to violence, health professionals were not conducting daily risk assessments. The barriers and facilitators identified provide direction for interventions that are necessary if the daily use of violence risk assessment tools is to be increased.

International changes in end-of-life practices over time: a systematic review.

BACKGROUND: End-of-life policies are hotly debated in many countries, with international evidence frequently used to support or oppose legal reforms. Existing reviews are limited by their focus on specific practices or selected jurisdictions. The objective is to review international time trends in end-of-life practices. METHODS: We conducted a systematic review of empirical studies on medical end-of-life practices, including treatment withdrawal, the use of drugs for symptom management, and the intentional use of lethal drugs. A search strategy was conducted in MEDLINE, EMBASE, Web of Science, Sociological Abstracts, PAIS International, Worldwide Political Science Abstracts, International Bibliography of the Social Sciences and CINAHL. We included studies that described physicians' actual practices and estimated annual frequency at the jurisdictional level. End-of-life practice frequencies were analyzed for variations over time, using logit regression. RESULTS: Among 8183 references, 39 jurisdiction-wide surveys conducted between 1990 and 2010 were identified. Of those, 22 surveys used sufficiently similar research methods to allow further statistical analysis. Significant differences were found across surveys in the frequency of treatment withdrawal, use of opiates or sedatives and the intentional use of lethal drugs (X 2 > 1000, p < 0.001 for all). Regression analyses showed increased use of opiates and sedatives over time (p < 0.001), which could reflect more intense symptom management at the end of life, or increase in these drugs to intentionally cause patients' death. CONCLUSION: The use of opiates and sedatives appears to have significantly increased over time between 1990 and 2010. Better distinction between practices with different legal status is required to properly interpret the policy significance of these changes. Research on the effects of public policies should take a comprehensive look at trends in end-of-life practice patterns and their associations with policy changes.

Medical end-of-life practices among Canadian physicians: a pilot study.

BACKGROUND: Medical end-of-life practices are hotly debated in Canada, and data from other countries are used to support arguments. The objective of this pilot study was twofold: to adapt and validate a questionnaire designed to measure the prevalence of these practices in Canada and the underlying decision-making process, and to assess the feasibility of a nationally representative study. METHODS: In phase 1, questionnaires from previous studies were adapted to the Canadian context through consultations with a multidisciplinary committee and based on a scoping review. The modified questionnaire was validated through cognitive interviews with 14 physicians from medical specialties associated with a higher probability of being involved with dying patients recruited by means of snowball sampling. In phase 2, we selected a stratified random sample of 300 Canadian physicians in active practice from a national medical directory and used the modified tailored method design for mail and Web surveys. There were 4 criteria for success: modified questions are clearly understood; response patterns for sensitive questions are similar to those for other questions; respondents are comparable to the overall sampling frame; and mean questionnaire completion time is less than 20 minutes. RESULTS: Phase 1: main modifications to the questionnaire were related to documentation of all other medical practices (including practices intended to prolong life) and a question on the proportionality of drugs used. The final questionnaire contained 45 questions in a booklet style. Phase 2: of the 280 physicians with valid addresses, 87 (31.1%) returned the questionnaire; 11 of the 87 declined to participate, for a response rate of 27.1% (n = 76). Most respondents (64 [84%]) completed the mail questionnaire. All the criteria for success were met. INTERPRETATION: It is feasible to study medical end-of-life practices, even for practices that are currently illegal, including the intentional use of lethal drugs. Results from this pilot study support conducting a large national study, but additional strategies would be necessary to improve the response rate.

Health care professionals' comprehension of the legal status of end-of-life practices in Quebec: study of clinical scenarios.

OBJECTIVE: To determine health care professionals' understanding of the current legal status of different end-of-life practices and their future legal status if medical aid in dying were legalized, and to identify factors associated with misunderstanding surrounding the current legal status. DESIGN: Cross-sectional survey using 6 clinical scenarios developed from a validated European questionnaire and from a validated classification of end-of-life practices. SETTING: Quebec. PARTICIPANTS: Health care professionals (physicians and nurses). MAIN OUTCOME MEASURES: Perceptions of the current legal status of the given scenarios and whether or not the practices would be authorized in the event that medical aid in dying were legalized. RESULTS: Among the respondents (n = 271, response rate 88.0%), more than 98% knew that the administration or prescription of lethal medication was currently illegal. However, 45.8% wrongly thought that it was not permitted to withdraw a potentially life-prolonging treatment at the patient's request, and this misconception was more common among nurses and professionals who had received their diplomas longer ago. Only 39.5% believed that, in the event that medical aid in dying were legalized, the use of lethal medication would be permitted at the patient's request, and 34.6% believed they would be able to give such medication to an incompetent patient upon a relative's request. CONCLUSION: Health care professionals knew which medical practices were illegal, but some wrongly believed that current permitted practices were not legal. There were various interpretations of what would or would not be allowed if medical aid in dying were legalized. Education on the clinical implications of end-of-life practice legislation should be promoted.

Comparing end-of-life practices in different policy contexts: a scoping review.

OBJECTIVES: End-of-life policy reforms are being debated in many countries. Research evidence is used to support different assumptions about the effects of public policies on end-of-life practices. It is however unclear whether reliable international practice comparisons can be conducted between different policy contexts. Our aim was to assess the feasibility of comparing similar end-of-life practices in different policy contexts. METHODS: This is a scoping review of empirical studies on medical end-of-life practices. We developed a descriptive classification of end-of-life practices that distinguishes practices according to their legal status. We focused on the intentional use of lethal drugs by physicians because of international variations in the legal status of this practice. Bibliographic database searches were supplemented by expert consultation and hand searching of reference lists. The sensitivity of the search strategy was tested using a set of 77 articles meeting our inclusion criteria. Two researchers extracted end-of-life practice definitions, study methods and available comparisons across policy contexts. Canadian decision-makers were involved to increase the policy relevance of the review. RESULTS: In sum, 329 empirical studies on the intentional use of lethal drugs by doctors were identified, including studies from 19 countries. The bibliographic search captured 98.7% of studies initially identified as meeting the inclusion criteria. Studies on the intentional use of lethal drugs were conducted in jurisdictions with permissive (62%) and restrictive policies (43%). The most common study objectives related to the frequency of end-of-life practices, determinants of practices, and doctors' adherence to regulatory standards. Large variations in definitions and research methods were noted across studies. The use of a descriptive classification was useful to translate end-of-life practice definitions across countries. A few studies compared end-of-life practice in countries with different policies, using consistent research methods. We identified no comprehensive review of end-of-life practices across different policy contexts. CONCLUSIONS: It is feasible to compare end-of-life practices in different policy contexts. A systematic review of international evidence is needed to inform public deliberations on end-of-life policies and practice.

[Communication process in consultation of patients with incurable disease: a prospective study]. / Étude prospective du processus communicationnel lié à l'annonce d'une maladie incurable.

Patients wish to be fully informed about their health, but some information and its disclosure may pose special challenges depending on the severity of the illness. This prospective observational study investigates the content of information about the disease and treatment, as well as the process by which information is disclosed as part of 51 consultations with people with malignant gliomas. Patients and their relatives were fully informed of the diagnosis and treatments (types, risks, practical details), but disease progression with and without treatment, like the prognosis, was rarely addressed. Relatives were more likely than patients to ask questions related to the severity of the illness and the prognosis, leaving doctors in the difficult position of determining whether and how the information may be disclosed. Ethical issues related to informed consent are discussed in light of an incurable disease with a fast progression.

Confusion between euthanasia and other end-of-life decisions: influences on public opinion poll results.

BACKGROUND: Public opinion polls indicate that a majority of Canadians are in favour of euthanasia. However, there have been many criticisms of the validity of these findings. The objective of this study was to assess public opinion towards euthanasia while controlling for possible threats to validity indicated in the literature review. METHODS: A telephone public opinion poll was conducted in 2002 with a representative sample of the general population of Quebec (n = 991; response rate = 49.8%). Respondents were asked about their support for euthanasia and treatment withdrawal and, for comparison, were asked a previously used question on euthanasia (Gallup) which has been criticized for methodological problems. Respondents were also asked to distinguish between euthanasia and other end-of-life decisions in hypothetical scenarios. RESULTS: Eleven percent more people supported euthanasia with the Gallup question than the question developed in this study. Support for euthanasia (69.6%) was less prevalent than for treatment withdrawal (85.8%). Respondents who failed to distinguish between euthanasia and treatment withdrawal or withholding treatment in hypothetical scenarios were more likely to support euthanasia in public opinion poll questions. Furthermore, there is a significant relationship between opinions about the acceptability of euthanasia and inaccurate knowledge of the nature of euthanasia. INTERPRETATION: Public opinion polls on euthanasia must be interpreted in the light of the wording of the question. Education of the population concerning euthanasia and other end-of-life decisions may be considered to be an important prerequisite to engage in public debate concerning the legalization of euthanasia.

Comparing models of helper behavior to actual practice in telephone crisis intervention: a Silent Monitoring Study of Calls to the U.S. 1-800-SUICIDE Network.

Models of telephone crisis intervention in suicide prevention and best practices were developed from a literature review and surveys of crisis centers. We monitored 2,611 calls to 14 centers using reliable behavioral ratings to compare actual interventions with the models. Active listening and collaborative problem-solving models describe help provided. Centers vary greatly in the nature of interventions and their quality according to predetermined criteria. Helpers do not systematically assess suicide risk. Some lives may have been saved but occasionally unacceptable responses occur. Recommendations include the need for quality assurance, development of standardized practices and research relating intervention processes to outcomes.

Which helper behaviors and intervention styles are related to better short-term outcomes in telephone crisis intervention? Results from a Silent Monitoring Study of Calls to the U.S. 1-800-SUICIDE Network.

A total of 2,611 calls to 14 helplines were monitored to observe helper behaviors and caller characteristics and changes during the calls. The relationship between intervention characteristics and call outcomes are reported for 1,431 crisis calls. Empathy and respect, as well as factor-analytically derived scales of supportive approach and good contact and collaborative problem solving were significantly related to positive outcomes, but not active listening. We recommend recruitment of helpers with these characteristics, development of standardized training in those methods that are empirically shown to be effective, and the need for research relating short-term outcomes to long-term effects.

Control-group study of an intervention training program for youth suicide prevention.

Few studies have examined whether training can improve competency in intervening with suicidal youths. In this study we attempted to verify the effectiveness of such a training program on helper competency. Forty-three helpers who received the training were compared with 28 helpers who did not. Participants who received the training improved in knowledge, attitudes, and intervention skills following the training, compared with the control group across measures. Their gains were maintained at 6-month follow-up. In this sample, implementation of a one-time training program improved helpers' competencies in youth suicide intervention.

Trends in acceptance of euthanasia among the general public in 12 European countries (1981-1999).

BACKGROUND: We wanted to examine how the acceptance of euthanasia among the general public in Western Europe has changed in the last decades, and we wanted to look for possible explanations. METHODS: We analysed data from the European Values Surveys, held in 1981, 1990, and 1999-2000 in 12 West European countries. In each country, representative samples of the general public were interviewed using the same structured questionnaire in all countries. Euthanasia was explained in the questionnaires as 'terminating the life of the incurably sick'. RESULTS: A total of 46 199 respondents participated in the surveys. A significant increase in acceptance of euthanasia could be observed in all countries except (West) Germany. While the average increase in euthanasia acceptance was 22%, the increase was particularly obvious in Belgium, Italy, Spain, and Sweden. Although changes in several characteristics of respondents, such as decrease in religious beliefs, rising belief in the right to self-determination, and (to a lesser extent) rise in levels of education, were associated with growing acceptance of euthanasia, they could only partly explain the increase of euthanasia acceptance over the years. CONCLUSIONS: An increase of euthanasia acceptance among the general public took place over the last two decades in almost all West European countries, possibly indicating a growing support for personal autonomy regarding medical end-of-life decisions. If this trend continues, it is likely to increase the public and political debate about the (legal) regulation of euthanasia under certain conditions of careful medical practice in several West European countries.

European public acceptance of euthanasia: socio-demographic and cultural factors associated with the acceptance of euthanasia in 33 European countries.

In many European countries, the last decade has been marked by an increasing debate about the acceptability and regulation of euthanasia and other end-of-life decisions in medical practice. Growing public sensibility to a 'right to die' for terminally ill patients has been one of the main constituents of these debates. Within this context, we sought to describe and compare acceptance of euthanasia among the general public in 33 European countries. We used the European Values Study data of 1999-2000 with a total of 41125 respondents (63% response rate) in 33 European countries. The main outcome measure concerned the acceptance of euthanasia (defined as 'terminating the life of the incurably sick', rated on a scale from 1 to 10). Results showed that the acceptance of euthanasia tended to be high in some countries (e.g. the Netherlands, Denmark, France, Sweden), while a markedly low acceptance was found in others (e.g. Romania, Malta and Turkey). A multivariate ordinal regression showed that weaker religious belief was the most important factor associated with a higher acceptance; however, there were also socio-demographic differences: younger cohorts, people from non-manual social classes, and people with a higher educational level tended to have a higher acceptance of euthanasia. While religious belief, socio-demographic factors, and also moral values (i.e. the belief in the right to self-determination) could largely explain the differences between countries, our findings suggest that perceptions regarding euthanasia are probably also influenced by national traditions and history (e.g. Germany). Thus, we demonstrated clear cross-national differences with regard to the acceptance of euthanasia, which can serve as an important basis for further debate and research in the specific countries.

Withdrawing an explicit request for euthanasia or physician-assisted suicide: a retrospective study on the influence of mental health status and other patient characteristics.

BACKGROUND: Mental health status may be closely related to an instability of intentions toward a premature death, but little is known about such instability following an explicit request for euthanasia or physician-assisted suicide (EAS) and patient characteristics associated with a change of mind. METHOD: A questionnaire was sent to 6596 general practitioners in The Netherlands (response rate 60%). Of these, 1681 provided descriptions of the most recent explicit request for EAS they had received in the preceding 18 months. RESULTS: Symptoms of depression and anxiety were related to a change of mind, but no relationship was found with the total score of the NOSGER Mood Dimension. Multinomial regression analysis revealed that patients who changed their mind had more mental health problems and less mental clarity than those who died by EAS. They also had fewer general health problems, had less unbearable and pointless suffering (according to the physician), were less concerned about loss of dignity and alternative treatment options were more frequently available. A further analysis revealed that mental health problems were more prevalent among patients whose requests were refused than among those who changed their mind. The physicians' evaluations of the reasons why a patient requested EAS were similar to a more objective measure of the patient characteristics. CONCLUSIONS: These findings suggest that mental health status must be carefully assessed, and possible instability of desire must be taken into account in the course of a request for EAS. These results require replication, and future studies should adopt a prospective method.