PURPOSE: Suicide bereavement confers unique risk and distress. In several countries, bereaved family members are called on to attend an inquest, an official public inquiry into deaths caused by external factors. The current study aimed to explore how suicide-bereaved family members (n = 18) experienced the inquest process, through qualitative semi-structured interviews.
METHOD: Participants were identified via coroner's records and had previously taken part in a case-control study.
RESULTS: Qualitative findings indicated four overall themes with respect to family members' experiences of the inquest process: "inquest as fearfully unknown", "structural processes of the inquest", "enduring public and private pain to obtain answers" and "gaining answers and making sense". Most family members experienced distress and fear as a result of several elements of the inquest process. Some participants had positive experiences but these did not outweigh the distress experienced by the majority of family members regarding their overall experience of the inquest process.
CONCLUSIONS: Key recommendations include informing family members of the main aspects and purpose of the inquest process beforehand, adapting the process to maximise the privacy and comfort of the bereaved relatives, and restricting graphic evidence being heard, where possible, to minimise distress experienced by family members.
BACKGROUND: The community prevalence of advance care directives (ACDs) is low despite known benefits of advance care planning for patients, families and health professionals.
AIM: To determine the community prevalence of instructional and appointing ACDs in New South Wales, Victoria and Queensland and factors associated with completion of these documents.
METHODS: A telephone survey of adults living in New South Wales, Victoria and Queensland (n=1175) about completion of instructional ACDs (making their own decisions about future health care) and appointing ACDs (appointing another to decide). Quota sampling occurred based on population size by state, gender and age, with oversampling in smaller jurisdictions (Victoria and Queensland).
RESULTS: Overall response rate was 33%. Six per cent of respondents reported completing an instructional ACD while 12% reported completing an appointing ACD. Female gender, higher educational level, personal experience of a major health scare and being widowed were significant predictors of completing an instructional ACD. Older age, higher educational level and being widowed were significant predictors of completing an appointing ACD.
CONCLUSIONS: Despite long-standing efforts to increase advance care planning, community prevalence of ACDs remains low, particularly for instructional ACDs. This study found some different predictors for instructional ACDs compared with appointing ACDs, and also a potential role for experiential factors in triggering uptake. These findings suggest supplementing general community awareness campaigns with more nuanced and targeted efforts to improve ACD completion.
BACKGROUND: Women who suffer an out-of-hospital cardiac arrest receive bystander cardiopulmonary resuscitation (CPR) less often than men. Understanding public perceptions of why this occurs is a necessary first step toward equitable application of this potentially life-saving intervention.
METHODS: We conducted a national survey of members of the public using Mechanical Turk, Amazon’s crowdsourcing platform, to determine reasons why women might receive bystander CPR less often than men. Eligible participants were adults (=18 years) located in the United States. Responses were excluded if the participant was not able to define CPR correctly. Participants were asked to answer the following free-text question: “Do you have any ideas on why women may be less likely to receive CPR than men when they collapse in public?” Descriptive statistics were used to define the cohort. The free-text response was coded using open coding, and major themes were identified via classical content analysis.
RESULTS: In total, 548 subjects were surveyed. Mean age was 38.8 years, and 49.8% were female. Participants were geographically distributed as follows: 18.5% West, 9.2% Southwest, 22.0% Midwest, 27.5% Southeast, and 22.9% Northeast. After analysis, 3 major themes were detected for why the public perceives that women receive less bystander CPR. They include the following: (1) sexualization of women's bodies; (2) women are weak and frail and therefore prone to injury; and (3) misperceptions about women in acute medical distress. Overall, 41.9% (227) were trained in CPR while 4.4% reported having provided CPR in a medical emergency.
CONCLUSIONS: Members of the general public perceive fears about inappropriate touching, accusations of sexual assault, and fear of causing injury as inhibiting bystander CPR for women. Educational and policy efforts to address these perceptions may reduce the sex differences in the application of bystander CPR.
Findings from an online survey of 350 adults who experienced early parental death showed that current dispositional gratitude was positively correlated with psychological well-being and posttraumatic growth and negatively correlated with depression. Further, 281 participants produced textual responses indicating they could remember the time following their parent's death. Increases in gratitude attributable to the experience of losing a parent were reported by 79% of these participants. They associated their increased gratitude with a newfound belief that life is precious and with greater appreciation for loved ones. Direction of change in gratitude was associated with psychological well-being, posttraumatic growth, and depression.
Cette étude visait à mesurer et à comparer les attitudes de différents groupes du Québec face à l'idée d'étendre l'aide médicale à mourir à des personnes inaptes à y consentir d'elles-mêmes au moment de l'acte.
BACKGROUND: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death.
AIM: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care.
DESIGN: A cross-sectional community household population survey.
SETTING AND PARTICIPANTS: Respondents to the Household Survey for England.
RESULTS: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related ( p < 0.001). Palliative care services reduced the proportion of deaths in hospital ( p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not ( p < 0.001). Respondents' income was not associated with palliative care access ( p = 0.233). Overall, respondents' income and home death were not related ( p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home ( p = 0.069).
CONCLUSION: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life.
L'amélioration de la prise en charge des enfants atteints de pathologies tumorales en phase palliative passe par une évaluation des pratiques médicales. Une enquête de pratique réalisée auprès de 40 médecins titulaires des 33 centres français d'hématologie-oncologie pédiatrique aide à cerner quelques pistes de réflexion autour d'enfants pour lesquels l'objectif est de mieux les aider à vivre sans l'espoir de les guérir.
Preference elicitation studies reporting societal views on the relative value of end-of-life treatments have produced equivocal results. This paper presents an alternative method, combining Q methodology and survey techniques (Q2S) to determine the distribution of 3 viewpoints on the relative value of end-of-life treatments identified in a previous, published, phase of this work. These were Viewpoint 1, "A population perspective: value for money, no special cases"; Viewpoint 2, "Life is precious: valuing life-extension and patient choice"; and Viewpoint 3, "Valuing wider benefits and opportunity cost: the quality of life and death." A Q2S survey of 4,902 respondents across the United Kingdom measured agreement with these viewpoints; 37% most agreed with Viewpoint 1, 49% with Viewpoint 2, and 9% with Viewpoint 3. Regression analysis showed associations of viewpoints with gender, level of education, religion, voting preferences, and satisfaction with the NHS. The Q2S approach provides a promising means to investigate how in-depth views and opinions are represented in the wider population. As demonstrated in this study, there is often more than 1 viewpoint on a topic and methods that seek to estimate that averages may not provide the best guidance for societal decision-making.
La loi du 2 février 2016 a créé de nouveaux droits pour les patients en fin de vie, dont celui d’une sédation profonde et continue maintenue jusqu’au décès à la demande du patient. Elle suscite des débats sur ses enjeux éthiques, notamment au sein des professionnels expérimentés de soins palliatifs. L’objectif de cette étude était d’analyser la lecture des médecins du DESC de médecine palliative et médecine de la douleur, de la loi du 2 février 2016. Il s’agissait d’une enquête par questionnaires en ligne, conduite entre avril et mai 2016. Les réponses mettaient en évidence un questionnement pour plus de 70 % des médecins, en lien avec des difficultés de définition des termes employés par le texte de loi : « affection grave et incurable », « pronostic vital engagé à court terme », « souffrance réfractaire ou insupportable », « traitements dont l’arrêt engage le pronostic vital à court terme et est susceptible d’entraîner une souffrance insupportable ». Alors que 39 % reconnaissaient à la loi des avancées, telles qu’une plus grande collégialité et un meilleur soulagement en fin de vie, 92 % exprimaient des craintes : risque de dérives euthanasiques, complexification de la relation soignant–soigné, idée d’une médecine capable de répondre à toutes les souffrances. Les jeunes médecins de soins palliatifs partagent les mêmes réserves que leurs aînés, rappelant la place de l’éthique et de la collégialité dans les décisions complexes en fin de vie.
BACKGROUND: Chaplain services are available in 68% of hospitals, but hospital chaplains are not yet incorporated into routine patient care.
OBJECTIVES: To describe how families of hospitalized children view and utilize hospital chaplains.
DESIGN: Telephone survey with 40 questions: Likert, yes/no, and short-answer responses.
SUBJECTS: Parents visited by a hospital chaplain during their child's hospitalization in a tertiary care center.
MEASUREMENTS: Descriptive statistics were used to characterize the sample. Nonparametrics were used to compare religious versus nonreligious parents. Regression was used to identify independent predictors of a chaplain visit positively influencing satisfaction with hospital care.
RESULTS: Seventy-four parents were interviewed; most were 25-50 years old, and 75% felt their child was very sick. Children ranged from newborn to adolescence. Forty-two percent of parents requested a chaplain visit; of the 58% with an unsolicited visit, 11% would have preferred giving prior approval. Parents felt that chaplains provided religious and secular services, including family support and comfort, help with decision making, medical terminology, and advocacy. Chaplains helped most parents maintain hope and reduce stress. Seventy-five percent of parents viewed chaplains as a member of the healthcare team; 38% reported that chaplains helped medical personnel understand their preferences for care and communication. Most parents (66%) felt that hospital chaplaincy increased their satisfaction with hospital care.
CONCLUSION: Families play a fundamental role in the recovery of hospitalized children. Parents view hospital chaplains as members of the healthcare team and report that they play an important role in the well-being of the family during childhood hospitalization. Chaplains positively influence satisfaction with hospital care.
Objectives: Patients with Amyotrophic Lateral Sclerosis (ALS) have expressed desire to become living organ donors but are unable to do so with current organ donation policies. Our objective is to assess ALS patient's interest in organ donation, and perceived concerns of this practice by ALS neurologists.
Patients and methods: An electronic survey was administered to ALS neurologists across the United States regarding living organ donation in ALS patients prior to respiratory failure.
Results: 52 complete responses were received from 121 invites. 67% (35/52) of neurologists expressed no concerns about living organ donation in ALS patients, and 33% had concerns. The concerns related to respiratory failure, anesthesia exposure and renal dysfunction. With their concerns addressed, 71% of neurologists reported that they would endorse living organ donation. 49% of neurologists reported being asked by a patient for information regarding living organ donation. ALS neurologists felt that 22.8% of ALS patients (median 19%) would be interested in learning more about organ donation, while only 6% of neurologists broach this subject with their patients.
Conclusion: Our results indicate that 1 in every 4 ALS patients may be interested in exploring options for living organ donation, and this topic is not routinely addressed by ALS clinics. These results indicate an unexplored area of patient interest. To honor a patient's wishes to donate, the transplant community will have to accommodate living organ donation from terminally ill patients, and address neurologist concerns. Such a practice could benefit two groups of patients.
Background: Structural aspects and current practice about end-of-life (EOL) decisions in German intensive care units (ICUs) managed by anesthesiologists are unknown. A survey among intensive care anesthesiologists has been conducted to explore current practice, barriers and opinions on EOL decisions in ICU.
Methods: In November 2015, all members of the German Society of Anesthesiology and Intensive Care Medicine (DGAI) and the Association of German Anesthesiologists (BDA) were asked to participate in an online survey to rate the presence or absence and the importance of 50 items. Answers were grouped into three categories considering implementation and relevance: Category 1 reflects high implementation and high relevance, Category 2 low and low, and Category 3 low and high.
Results: Five-hundred and forty-one anesthesiologists responded. Only four items reached >/=90% agreement as being performed "yes, always" or "mostly", and 29 items were rated "very" or "more important". A profound discrepancy between current practice and attributed importance was revealed. Twenty-eight items attributed to Category 1, six to Category 2 and sixteen to Category 3. Items characterizing the most urgent need for improvement (Category 3) referred to patient outcome data, preparation of health care directives and interdisciplinary discussion, standard operating procedures, implementation of practical instructions and inclusion of nursing staff and families in the process.
Conclusion: The present survey affirms an urgent need for improvement in EOL practice in German ICUs focusing on advanced care planning, distinct aspects of changing goals of care, implementation of standard operating procedures, continuing education and reporting of outcome data.
Objectif : Les bénéfices de la ventilation non invasive (VNI) sont démontrés en pédiatrie. En soins palliatifs (SP) plusieurs études ont montré son impact positif. L’objectif de cette étude était de recueillir l’opinion et l’expérience des pneumo-pédiatres, médecins de SP et réanimateurs pédiatres français sur l’utilisation de la VNI en SP.
Méthode : Une enquête observationnelle multicentrique a été réalisée en février et mars 2015 grâce à un questionnaire envoyé à 186 praticiens.
Résultats : En cas de détresse respiratoire aiguë (DRA), la VNI était jugée raisonnable par 84 % des praticiens pour un enfant à ne pas intuber et par 35 % pour un enfant bénéficiant uniquement de mesures de confort (p<0,0001). En cas de symptômes d’insuffisance respiratoire chronique (IRC), la VNI était jugée raisonnable par 68 % des praticiens chez un enfant à ne pas intuber et par 30 % si l’enfant bénéficiait uniquement de mesures de confort (p<0,05). La dyspnée a été classée principale indication de VNI en SP. Les critères d’efficacité retenus étaient principalement cliniques : confort et satisfaction de l’enfant et de sa famille. L’hypercapnie et la baisse de la saturation pulsée en oxygène (SpO2) étaient peu utilisées comme indication ou marqueur d’efficacité de VNI. Une directive anticipée de recours à la VNI a été rapportée par 60 % des praticiens.
Conclusion : Les pédiatres français ont recours à la VNI en SP et ils considèrent ce traitement raisonnable pour les enfants à ne pas intuber. Les indications et critères d’efficacité sont essentiellement cliniques dans ce contexte.
Background: Utilization of hospice has increased significantly over the past 2 decades, but there has been no recent assessment of US physicians' opinions regarding and practices of referring patients to hospice.
Methods: We surveyed 2016 US physicians from various specialties. Respondents agreed or disagreed with 2 statements: "For most patients, hospice provides better care at the end of life than they would otherwise receive without hospice" and "Many patients who enter hospice end up missing out on medical interventions from which they would have benefited." Physicians were also asked, "In the past 12 months, approximately how many patients and/or their surrogates have you encouraged to consider entering hospice?"
Results: Ninety-eight percent of physicians agreed that hospice provides better care at the end of life than the patient would receive without hospice. Only 11% of physicians agreed that patients who enter hospice miss out on medical interventions from which they would have benefitted. Ninety-two percent encouraged at least 1 patient to consider hospice in the previous 12 months. Oncologists were the most ambivalent about whether patients who enter hospice miss out on beneficial interventions, but they also referred more patients to hospice than physicians from other specialties.
Conclusion: US physicians overwhelmingly believe hospice is the best form of care for most patients at the end of life. Compared to a study published in 1998, the median oncologist reports referring fewer patients to hospice, but the median general internist reports referring more.
Un aspect de la transformation du réseau de la santé et des services sociaux qui interpelle de plus en plus les chercheurs et les gestionnaires est celui de la participation accrue et active de l'entourage et de la famille dans la prise en charge d'un proche. Plus précisément, cette recherche s'intéresse aux aidantes naturelles et à leur rôle comme dispensatrices de soins et de services à un proche en perte d'autonomie. Afin de bien situer cette étude, la recension des écrits entreprend un survol du contexte social et démographique dans lequel s'inscrivent les situations de prise en charge d'un proche par la famille. On y rappelle également qui sont les aidantes naturelles et pourquoi ce sont plus souvent des femmes que des hommes. De plus, on y indique qui sont les personnes dont elles, prennent soin et quelles sont les tâches reliées à cette prise en charge ainsi que les motivations qui les ont amenées à prendre soin de leur proche. On y recense également les conséquences et les limites de la prise en charge. Enfin, la recension conclut sur les ressources de soutien formel et informel qui ont été mises en place pour supporter les aidantes naturelles tout en situant le contexte de transformation du réseau de la santé et des services sociaux dans lequel s'inscrivent ces services de soutien. Par ailleurs, nous croyons que les aidantes naturelles peuvent être interpellées à titre de détentrices d'informations pertinentes. Ainsi, nous avons interrogé sept informatrices clés par le biais d'entrevues semi-dirigées. Ceci nous a permis de dresser leur profil, le profil des personnes dont elles prennent soin ainsi que le profil de la prise en charge. Ainsi, nous avons déterminé l'événement déclencheur qui a motivé le début de la prise en charge, les paramètres de celle-ci et ses impacts. La section sur le soutien reçu et requis par ces aidantes nous amène à réfléchir sur l'organisation et la prestation des services et sur la nécessité de mettre en place des réseaux de services intégrés et des plans de services individualisés afin de mieux répondre aux besoins des personnes en perte d'autonomie et de leur famille. (R.A.).
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Background: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients.
Methods: Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales - a generic measure (EQoL), a palliative care specific measure (POS) and a measure of hope (Herth Hope Index). Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation.
Results: Of 171 patients identified, 140 (81%) consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors - self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items.
Conclusion: We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.
Background: Continuous sedation, contrary to euthanasia, has been increasingly accepted among medical professionals worldwide. In the Netherlands, a national guideline for continuous palliative sedation has been developed to contribute to the quality of palliative sedation practice. The present follow-up study investigated whether the practice of continuous sedation has changed after the introduction of this guideline.
Methods: This study compared the practice of continuous sedation before and after the introduction of the guideline on December 7, 2005. A baseline measurement was performed between February 1, 2003, and May 1, 2005, with an enrollment of 492 physicians (medical specialists, general practitioners, and nursing home physicians). From January 1 to June 30, 2007, after the introduction of a national guideline for palliative sedation, a follow-up study was performed with the respondents of the baseline study. Physicians were asked to report on their last case of deep and continuous sedation in the past 12 months.
Results: This study reports the results of the follow-up study and compares them to the results of the baseline study. The response rate was 69.3% (n = 341). Of these physicians, 160 reported a last case of continuous sedation in both the baseline and the follow-up studies. Physicians reported a significant increase in patient involvement in decision making, from 72.3% to 82.2%. Pain remained the most often reported reason to start sedation, whereas exhaustion as a reason for sedation increased. The use of benzodiazepines increased from 69.9% to 90.4%. In the first and second measurements, symptom-directed treatment during sedation was applied in 56% to 58% of the cases. In the second period, there was more often an explicit decision to not give artificial hydration during sedation (78.8% vs 56.3%). Of the physicians, 34.2% were convinced that sedation shortened the life of the patient because of dehydration.
Conclusions: After the introduction of the guideline, physicians reported that changes in palliative sedation practice conform to the recommendations of this guideline. For example, benzodiazepines were used for sedation more frequently than before and patient involvement in the decision-making process improved. Possible effects of dehydration and the large variation in symptom-directed treatment during sedation deserve careful attention.
Context: The Oregon Death with Dignity Act, passed by ballot measure in 1994 and enacted in October 1997, legalized physician-assisted suicide for competent, terminally ill Oregonians, but little is known about the effects of the act on clinical practice or physician perspective.
Objective: To examine Oregon physicians' attitudes toward and practices regarding care of dying patients since the passage of the Death with Dignity Act.
Design, setting and participants: A self-administered questionnaire was mailed in February 1999 to Oregon physicians eligible to prescribe under the act. Of 3981 eligible physicians, 2641 (66%) returned the questionnaire by August 1999.
Main outcome measures: Physicians' reports of their efforts to improve care for dying patients since 1994, their attitudes, concerns, and sources of information about participating in the Death with Dignity Act, and their conversations with patients regarding assisted suicide.
Results: A total of 791 respondents (30%) reported that they had increased referrals to hospice. Of the 2094 respondents who cared for terminally ill patients, 76% reported that they made efforts to improve their knowledge of the use of pain medications in the terminally ill. Nine hundred forty-nine responding physicians (36%) had been asked by a patient if they were potentially willing to prescribe a lethal medication. Seven percent of all survey participants reported that 1 or more patients became upset after learning the physician's position on assisted suicide, and 2% reported that 1 or more patients left their care after learning the physician's position on assisted suicide. Of the 73 physicians who were willing to write a lethal prescription and who had received a request from a patient, 20 (27%) were not confident they could determine when a patient had less than 6 months to live.
Conclusion: Most Oregon physicians who care for terminally ill patients report that since 1994 they have made efforts to improve their ability to care for these patients and many have had conversations with patients about assisted suicide.
Background: There is limited data on the use of thromboprophylaxis in patients with advanced cancer. We therefore aimed to study the practice of thromboprophylaxis in palliative care units in Austria.
Methods: We monitored use, indication, and contraindications to thromboprophylaxis in 134 patients hospitalized in 21 palliative care units in a prospective, cross-sectional study.
Results: Forty-seven percent of patients were on low molecular weight heparin on the day of the study for primary or secondary thromboembolism. Thromboprophylaxis had been withdrawn in 18% of the patients upon admission to the palliative care unit. Contraindications for thromboprophylaxis were present in 27% of all patients. Cancer was present in 86% of the patients. The use of thromboprophylaxis was similar in cancer patients and in non-cancer patients (49% vs. 42%). Contraindications for thromboprophylaxis were present in 24% of all cancer patients. Significantly more bedridden cancer patients had contraindications for prophylaxis when compared with mobile cancer patients (35% vs. 16%; p = 0.03). Low performance status was by far the most frequent contraindication among these patients (89%). Seventy-one percent of all bedridden cancer patients were treated in accordance with common guidelines for thromboprophylaxis when contraindications were taken into account. Eighty-seven percent of patients who had been involved in decision making opted for getting prophylaxis.
Conclusions: Our data reveal that about half of all cancer patients in palliative care units are treated with thromboprophylaxis. Low performance status was the most frequent contraindication for thromboprophylaxis.