Nous avons cherché à savoir si le dispositif Leonetti-Claeys relatif à la sédation (DLC) relève d’une sédation palliative ou terminale, et comment se sont positionnées les dernières recommandations professionnelles à cet égard. Il s’avère que le DLC ne cherche pas à diminuer, de façon ajustée et proportionnée, la perception de symptômes réfractaires, dans le respect des enjeux relationnels de la fin de vie — ce qui correspondrait à la sédation palliative. Il consiste davantage à maîtriser les modalités du mourir par l’application standardisée d’une procédure de déconnexion psychique et relationnelle, et constitue dès lors un type de sédation terminale. Derrière ce changement de paradigme, on peut craindre une double réduction : celle de la dignité à la maîtrise des conditions du mourir, et celle de la relation de soins à un « droit à ». À l’inverse, les recommandations publiées par la Société française d’accompagnement et de soins palliatifs (SFAP) et la Haute Autorité de santé (HAS) se sont efforcées de replacer le DLC dans une visée palliative. Fait nouveau, elles distinguent maintenant entre sédation proportionnée et sédation disproportionnée. Mais la question est posée de savoir si le registre même des efforts déployés, hautement protocolisés, ne risque pas pourtant de renforcer la logique technicienne du DLC. Par ailleurs, le tableau comparatif de la HAS entre le DLC et l’euthanasie est erroné. Au final, le DLC induit une prise en charge plus intensive que palliative. Tel est le paradoxe d’une réponse technicienne aux enjeux relationnels de la souffrance en fin de vie.
BACKGROUND: The integration of palliative care into standard oncology care is supported by research to improve quality of life and symptom distress in patients with advanced cancer. In 2016, the American Society of Clinical Oncology (ASCO) released practice guidelines for oncology palliative care that emphasized interprofessional assessment and management of this patient population.
OBJECTIVES: The purpose of this study was to evaluate the effect of clinical guidelines on symptom distress in patients with advanced cancer.
METHODS: In two oncology palliative care clinics, the Edmonton Symptom Assessment Scale (ESAS) scores for pain, fatigue, and anxiety were measured prior to consultation (T1) and at two subsequent visits (T2 and T3). A standardized documentation template was used to measure fidelity for key guideline components.
FINDINGS: Pain, fatigue, and anxiety ESAS scores were statistically lower from T1 to T3. The frequency of patients having a decrease of 2 or more points for all symptoms increased compared to baseline data. There was 100% compliance to the documentation template during the guideline implementation.
As the median age of practicing physicians increases, ethical dilemmas due to age-related cognitive decline among clinicians will become ever more pressing. Compelling data show that despite acknowledgement of their duty to protect the public, physicians often fail to report themselves, their colleagues, or their physician-patients when cognitive decline appears to impact medical practice adversely. As such, efforts to educate physicians about ethical obligations and various tactful methodologies to report themselves or others seem ineffective. Illustrated by a case report of age-related cognitive decline in a practicing physician, practical recommendations are made both to develop and validate cognitive screening in middle-aged physicians, presumably before the onset of age-related cognitive decline.
INTRODUCTION: Dying patients with implantable defibrillators (ICD) have a risk of receiving unnecessary shocks before death. The aim of this study was to investigate if deactivation of shock therapy at end-of-life has increased since publication of new guidelines in 2010 on ICD management.
METHOD AND RESULTS: This is a study of two groups of ICD patients who died in hospitals before and after publication of new guidelines. Group 1 consists of 89 patients who died between 2003 and 2010. Group 2 consists of 252 patients, the total number of ICD patients in Sweden who died in hospital during 2014. Data was obtained from the Swedish ICD and Pacemaker Registry, Swedish Tax Agency and patient medical notes. Two-thirds died in wards other than Cardiology. Fifty-four percent in group 1 had a Do-Not-Resuscitate-order (DNR) compared to 73% in group 2. Shock deactivation was present in 52% in group 1 and 67% in group 2. The difference in shock deactivation between group 1 and 2 was only significant (p = 0.014) for DNR-patients treated in Cardiology. A significant difference (p = 0.036) was found in deactivation within group 2 between DNR-patients in Cardiology vs. DNR-patients in Non-Cardiology wards.
CONCLUSION: Two-thirds of ICD patients die in wards other than Cardiology. Since publication of guidelines on ICD management there is a general increase in shock deactivation for DNR-patients, but only significant for patients in Cardiology. This implicate that actions have to be taken for patients treated in Non-Cardiology wards to bridge the gap between guidelines recommendations and clinical practice.
BACKGROUND: The prevalence of diabetes mellitus (DM) is rising with an increased risk of developing it as a person ages. Therefore, more persons will have comorbid DM throughout their health journey and are potentially prone to unpleasant symptoms associated with poor glycemic control at the end of life (EOL). We performed an in-depth literature review to examine evidence-based recommendations on DM management at the EOL.
DESIGN: A librarian-assisted systematic and gray literature search was performed in electronic clinical databases and Google™ for diabetes management articles (DMAs). National and international diabetes, palliative care, and general guideline websites were searched for clinical practice guidelines (CPGs).
INCLUSION CRITERIA: adults =18 years with terminal illnesses, articles published between 2007 and 2017 with blood sugar target, monitoring frequency, and management recommendations for type 1 and type 2 DM.
EXCLUSION CRITERIA: conference poster abstracts and CPGs without published year or references. Two independent appraisers evaluated the CPGs using the "Rigour of Development" domain of the Appraisal of Guideline Research and Evaluation II (AGREE II) instrument.
RESULTS: Nine full-text DMAs were included for review from 2476 screened articles. Twenty-one CPG websites were searched. For the six included CPGs, the AGREE II "Rigour of Development" domain scores ranged from 6% to 34%. We found no high-quality evidence for DM management at the EOL. Treatment recommendations were based primarily on expert opinion (level IV evidence).
CONCLUSIONS: Higher quality studies are required to inform a standardized approach to the management of DM at the EOL.
High-quality data support multiple clinical benefits of integrating palliative care into routine oncology care. Though these data come largely from the medical oncology literature, data from surgical oncology populations support similar associations between palliative care integration and improved clinical outcomes, all without compromise in survival. This paper will review data supporting palliative care integration into oncology care, with a focus on surgical populations and recommendations for incorporating palliative care into surgical oncology.
The process of advance care planning in dementia is far from straightforward; as dementia progresses, the ability to consider future thoughts and actions becomes compromised, thus affecting decision-making abilities. Family carers find themselves increasingly in a position where they need to inform, or directly make, decisions on behalf of the person with dementia. This article discusses the context and importance of a palliative care approach and recommends rationales and strategies for healthcare professionals to support families affected by dementia to better plan for their future care.
Objective: the aim of this study was to map end-of-life care in acute hospital settings against Elements 1-5 of the Australian Commission on Safety and Quality in Health Care's (ACSQHC) Essential Elements for Safe and High-Quality End-of-Life Care.
Methods: A retrospective medical record audit of deceased in-patients was conducted from 2016 at one public (n = 320) and one private (n = 132) hospital in Melbourne, Australia. Ten variables, key to end-of-life care according to the ACSQHC's Elements 1-5 were used to evaluate end-of-life care.
Results: Most patients (87.2%) had a limitation of medical treatment. In 91.97% (P < 0.0001) of cases, a written entry indicating poor prognosis preceded a documented decision to provide end-of-life care, with a documented decision noted in 81.1% of cases (P < 0.0001). Evidence of pastoral care involvement was found in 41.6% of cases (P < 0.0001), with only 33.1% of non-palliative care patients referred to specialist palliative care personnel (P = 0.059). An end-of-life care pathway was used in 51.1% of cases (P < 0.0001).
Conclusion: There is clear scope for improvement in end-of-life care provision. Health services need to mandate and operationalise Elements 1-5 of the ACSQHC's Essential Elements into care systems and processes, and ensure nationally consistent, high-quality end-of-life care.What is known about the topic? Acute care settings provide the majority of end-of-life care. Despite the ACSQHC's Ten Essential Elements, little is known about whether current end-of-life care practices align with recommendations. What does this paper add? There is room for improvement in providing patient-centred care, increasing family involvement and teamwork, describing and enacting goals of care and using triggers to prompt care. Differences between public and private hospitals may be the result of differences in standard practice or policy and differences in cultural diversity.What are the implications for practitioners? The Essential Elements need to be mandated and operationalised into mainstream care systems and processes as a way of ensuring safe and high-quality end-of-life care.
Palliative care has a very important role in the care of patients with motor neurone disease and their families. There is increasing emphasis on the multidisciplinary assessment and support of patients within guidelines, supported by research. This includes the telling of the diagnosis, the assessment and management of symptoms, consideration of interventions, such as gastrostomy and ventilatory support, and care at the end of life. The aim of palliative care is to enable patients, and their families, to maintain as good a quality of life as possible and helping to ensure a peaceful death.
Alors que le rapport d'information du Sénat sur la situation dans les EHPAD lui était remis, Mme Agnès Buzyn, ministre des solidarités et de la santé, disait aux sénateurs : "Le désarroi quotidien du personnel [des EHPAD] est en partie liée au fait que les personnes accueillies meurent en moyenne dans les deux ans. C'est très anxiogène et déprimant. Nous devons former le personnel et organiser la fin de vie en Ehpad." Mais comment ? Ce dossier, réalisé en collaboration avec la SFAP et le CNSPV, revient sur les droits des malades en fin de vie issus des lois du 22 avril 2005 et du 2 février 2016, apporte des données chiffrées et présente l'expérience de l'équipe mobile de soins palliatifs du Val-d'Oise, une EMSP entièrement réservée aux EHPAD.
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Les importantes évolutions démographiques et sociétales demandent que les soins palliatifs se développent au domicile des personnes malades. Les équipes mobiles, mal réparties sur le territoire, soutiennent la nécessité pour l'hôpital de se tourner vers la ville (HAD) et de participer à la coordination des soins. Celle-ci mobilise de nombreuses ressources et le médecin traitant y tient une place centrale. (R.A.).
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As detailed in the lead article in this Special Issue, the Survivors of Suicide Loss Task Force of the National Action Alliance for Suicide Prevention in the United States has recently worked to formulate national guidelines to mitigate the harmful aftereffects of suicide in social and family systems. In the present article, we elaborate on one of four strategic directions addressed by the Task Force, namely, the development of goals and objectives for surveillance, research and evaluation of the impact of suicide loss. By emphasizing methodological guidelines for the conduct of future studies and illustrating progressive programs of investigation as leading exemplars, we hope to contribute to the sophistication of research on public health initiatives, peer support and professional intervention with communities, families and individuals affected by suicide loss.
BACKGROUND: Palliative care was a priority issue in the Cancer Control Act enacted in 2007 in Japan, and this has resulted in efforts being made toward educational goals in clinical settings. An investigation of how descriptions of palliative care for the treatment of cancer have changed in clinical practice guidelines (CPGs) could be expected to provide a better understanding of palliative care-related decision-making. This study aimed to identify trends in descriptions of palliative care in cancer CPGs in Japan before and after enactment of the Cancer Control Act.
METHODS: Content analysis was used to count the lines in all relevant CPGs. We then compared the number of lines and the proportion of descriptions mentioning palliative care at two time points: the first survey (selection period: February to June 2007) and the second survey (selection period: February to December 2015). Descriptions from the CPGs were independently selected from the Toho University Medical Media Center and Medical Information Network Distribution Service databases, and subsequently reviewed, by two investigators.
RESULTS: Descriptions were analyzed for 10 types of cancer. The proportion of descriptions in the first survey (4.4%; 933/21,344 lines) was similar to that in the second survey (4.5%; 1325/29,269 lines).
CONCLUSIONS: After the enactment of the Cancer Control Act, an increase was observed in the number, but not in the proportion, of palliative care descriptions in Japanese cancer CPGs. In the future, CPGs can be expected to play a major role in helping cancer patients to incorporate palliative care more smoothly.
Introduction: Many cardiopulmonary resuscitation (CPR) attempts are unsuccessful and must be terminated. On the contrary, premature termination results in a self-fulfilling prophecy. This study aimed to investigate 1) physicians' self-assessed competence in terminating CPR, 2) physicians' and nurses' knowledge of the European Resuscitation Council guidelines on termination, and 3) single factors leading to termination.
Methods: Questionnaires were distributed at advanced cardiac life support (ACLS) courses at a university hospital in Denmark. Participants included ACLS health care providers, ie, physicians and nurses from cardiac arrest teams, intensive care and anesthetic units or medical wards with a duty to provide ACLS. Physicians were divided into junior physicians (house officers) and experienced physicians (specialist registrars and consultants).
Results: Overall, 308 participants responded (104 physicians and 204 nurses, response rate: 98%). Among physicians, 37 (36%) did not feel competent to decide when to terminate CPR (junior physicians: n=16, 64%, compared with experienced physicians: n=21, 28%, P=0.002). Two (2%) physicians and one (0.5%) nurse were able to state the contents of termination guidelines. Several factors were reported to impact termination, including absence of a pupillary light reflex (physicians: 17%, nurses: 22%) and cardiac standstill on echocardiography (physicians: 18%, nurses: 20%). Moreover, nine (9%) physicians and 35 (17%) nurses would terminate prolonged CPR despite a shockable rhythm present.
Conclusion: One-third of all physicians did not feel competent to decide when to terminate CPR. Physicians' and nurses' knowledge of termination guidelines was poor, and both professions reported unvalidated or controversial factors as a single reason for terminating CPR.
BACKGROUND: Internationally, efforts are underway to develop coordinated and standardized approaches for palliative care service delivery by improving service quality in hospice and palliative care networks. German legal regulations explicitly demand networking between hospice and palliative care providers. However, there is little research on models of cooperation and the building and development of hospice and palliative care networks. Research-based recommendations for network building and advancement are lacking.
OBJECTIVE: The study aim was to develop empirical recommendations for the building of new and advancement of existing hospice and palliative care networks in Bavaria, Germany.
METHODS: The project utilized a qualitative approach. The research project was structured in six sequential phases: 1) semi-structured individual interviews on status quo of networks, 2) a workshop including a focus group to develop definitions of key terms and prioritize major network themes, 3) semi-structured face-to-face interviews on factors enabling and inhibiting cooperation, 4) drafting of a recommendation for regional hospice and palliative care networks, 5) an online consensus survey questionnaire to rate relevance and feasibility of the draft recommendation and an internal consensus meeting to revise the draft, and 6) an expert workshop to develop examples of realization. Coordinators and chairpersons of 12 hospice and palliative care networks constitute the study population for study phases 1 to 3, 5, and 6. Network representatives partook in one (n=6), two (n=6), three (n=4), four (n=2), or all five (n=1) of the study phases 1, 2, 3, 5, and 6. Further experts participated in one (n=10) or both (n=1) of the phases 5 and 6.
RESULTS: Recommendations were drafted for six thematic fields: (i) missions and aims, (ii) roles and responsibilities, (iii) coordination, (iv) communication and information channels, (v) public visibility, and (vi) funding. The whole set of recommendations was rated by 90% of the participants to be fully or somewhat important for network building and development. A total of 22 recommendations was approved.
CONCLUSIONS: The call for establishing and developing standards for hospice and palliative care networks was situated within the current policy climate of Germany and the broader international community. The present recommendations can aid implementation of this request and have a strong relevance for practice.
PURPOSE: To revise the recommendation on the use of concurrent chemotherapy (CC) with palliative thoracic external beam radiation therapy (EBRT) made in the original 2011 American Society for Radiation Oncology guideline on palliative thoracic radiation for lung cancer.
METHODS AND MATERIALS: Based on a systematic PubMed search showing new evidence for this key question, the task force felt an update was merited. Guideline recommendations were created using a predefined consensus-building methodology supported by American Society for Radiation Oncology-approved tools for grading evidence quality and recommendation strength.
RESULTS: Although few randomized clinical trials address the question of CC combined with palliative thoracic EBRT for non-small cell lung cancer (NSCLC), a strong consensus was reached among the task force on recommendations for incurable stage III and IV NSCLC. For patients with stage III NSCLC deemed unsuitable for curative therapy but who are (1) candidates for chemotherapy, (2) have an Eastern Cooperative Oncology Group PS of 0 to 2, and (3) have a life expectancy of at least 3 months, administration of a platinum-containing chemotherapy doublet concurrently with moderately hypofractionated palliative thoracic radiation therapy is recommended over treatment with either modality alone. For patients with stage IV NSCLC, routine use of concurrent thoracic chemoradiation is not recommended.
CONCLUSIONS: Optimal palliation of patients with incurable NSCLC requires coordinated interdisciplinary care. Recent data establish a rationale for CC with palliative thoracic EBRT for a well-defined subset of patients with incurable stage III NSCLC. For all other patients with incurable NSCLC, data remain insufficient to support this treatment approach.
The first German interdisciplinary S3-guideline on the diagnosis, therapy and follow-up of patients with endometrial cancer was published in April 2018. Funded by German Cancer Aid as part of an Oncology Guidelines Program, the lead coordinators of the guideline were the German Society of Gynecology and Obstetrics (DGGG) and the Gynecological Oncology Working Group (AGO) of the German Cancer Society (DKG).
Purpose: Using evidence-based, risk-adapted therapy to treat low-risk women with endometrial cancer avoids unnecessarily radical surgery and non-useful adjuvant radiotherapy and/or chemotherapy. This can significantly reduce therapy-induced morbidity and improve the patient's quality of life as well as avoiding unnecessary costs. For women with endometrial cancer and a high risk of recurrence, the guideline defines the optimal extent of surgical radicality together with the appropriate chemotherapy and/or adjuvant radiotherapy if required. An evidence-based optimal use of different therapeutic modalities should improve the survival rates and quality of life of these patients. This S3-guideline on endometrial cancer is intended as a basis for certified gynecological cancer centers. The aim is that the quality indicators established in this guideline will be incorporated in the certification processes of these centers.
Methods: The guideline was compiled in accordance with the requirements for S3-level guidelines. This includes, in the first instance, the adaptation of source guidelines selected using the DELBI instrument for appraising guidelines. Other consulted sources included reviews of evidence, which were compiled from literature selected during systematic searches of literature databases using the PICO scheme. In addition, an external biostatistics institute was commissioned to carry out a systematic search and assessment of the literature for one part of the guideline. Identified materials were used by the interdisciplinary working groups to develop suggestions for Recommendations and Statements, which were then subsequently modified during structured consensus conferences and/or additionally amended online using the DELPHI method, with consent between members achieved online. The guideline report is freely available online.
Recommendations: Part 2 of this short version of the guideline presents recommendations for the therapy of endometrial cancer including precancers and early endometrial cancer as well as recommendations on palliative medicine, psycho-oncology, rehabilitation, patient information and healthcare facilities to treat endometrial cancer. The management of precancers of early endometrial precancerous conditions including fertility-preserving strategies is presented. The concept used for surgical primary therapy of endometrial cancer is described. Radiotherapy and adjuvant medical therapy to treat endometrial cancer and uterine carcinosarcomas are described. Recommendations are given for the follow-up care of endometrial cancer, recurrence and metastasis. Palliative medicine, psycho-oncology including psychosocial care, and patient information and rehabilitation are presented. Finally, the care algorithm and quality assurance steps for the diagnosis, therapy and follow-up of patients with endometrial cancer are outlined.
BACKGROUND: "To die with dignity" has reached the significance of a core value in democratic societies. Based on this unconditional value, people require autonomy and care. "Voluntary stopping of eating and drinking" (VSED) represents an alternative to assisted suicide because no one else is involved in the action of death fastening, even though from outside, it might be considered as an extreme form of passive euthanasia. However, there are no data available about the prevalence and frequency of either explicit VSED or the implicit reduction of food and liquid in Switzerland. The responsible and independent ethics committee of the Greater Region of Eastern Switzerland (EKOS 17/083) approved this study.
OBJECTIVE: The objectives of the study were to research the prevalence and frequency of different types (implicit and explicit) of VSED in Switzerland; to explore the experiences, attitudes, handling and recommendations made by palliative care experts; to develop a practical recommendation about VSED, which will be validated by experts in Delphi rounds.
METHODS: This protocol describes a convergent mixed-method design to answer the research questions. In the first step, a cross-sectional trilingual survey (in German, French, and Italian) will be carried out to obtain a comprehensive representative picture of VSED in Switzerland. In the second step, qualitative research will be carried out by focus group interviews with palliative care experts. The interviews will be recorded, transcribed, and analyzed using generic coding, and embedded in an explorative descriptive qualitative approach. Based on the results of the first two steps, a practical recommendation will be developed. Experts will validate the practical recommendation in Delphi rounds.
RESULTS: The enrolment was completed in summer of 2018. Data analysis is currently underway and the first results are expected to be submitted for publication in the end of 2019.
CONCLUSIONS: The results of this study will provide important information about the prevalence and frequency of VSED as well as the interpretation of palliative care experts about handling VSED in daily work. Furthermore, the practice recommendation will help professionals and institutions to improve the quality of care in patients and their relatives who made the decision to fasten death by VSED.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/10358.
Methadone has several unique characteristics that make it an attractive option for pain relief in serious illness, but the safety of methadone has been called into question after reports of a disproportionate increase in opioid-induced deaths in recent years. The American Pain Society (APS), College on Problems of Drug Dependence, and the Heart Rhythm Society collaborated to issue guidelines on best practices to maximize methadone safety and efficacy, but guidelines for the end-of-life scenario have not yet been developed. A panel of 15 interprofessional hospice and palliative care experts from the US and Canada convened in February 2015 to evaluate the APS methadone recommendations for applicability in the hospice and palliative care setting. The goal was to develop guidelines for safe and effective management of methadone therapy in hospice and palliative care. This article represents the consensus opinion of the hospice and palliative care experts for methadone use at end of life, including guidance on appropriate candidates for methadone, detail in dosing, titration, and monitoring of patients' response to methadone therapy.
Lesbian, gay bisexual, transgender, and queer or questioning (LGBTQ) older adults have unique health care needs, especially in the palliative care and hospice setting. In this article, we present a male patient with metastatic ovarian cancer, admitted with worsening dyspnea, now at the end of life. Only his wife was aware of his identified gender, and nondisclosure was very important to him. As he continued to decline, the team navigated LGBTQ-sensitive care within the health care setting, insurance inequalities, and support and communication to his family. This case study summarizes clinical recommendations for the LGBTQ individual in the hospice and palliative care setting, suggesting how our patient's care may have been improved. With the changes in social acceptance and attitudes, the LGBTQ community has become more visible and their numbers appear to be growing. It is important, therefore, that hospice and palliative care providers be educated on their needs to provide competent and inclusive health care.