La mort de Vincent Lambert, le 11 juillet 2019 à la suite d’une décision médicale, a conclu six années de controverses savantes et judiciaires qui ont passionné et divisé les opinions publiques bien par-delà l’Hexagone. Elle n’a mis fin ni aux débats, ni aux polémiques éthiques, politiques, sociétales portant sur les droits de la personne, qu’elle soit vulnérable, handicapée ou en fin de vie.
Dressant la chronique des temps et des événements qui ont conduit à cette décision, Emmanuel Hirsch commente chacun d’entre eux avec expertise, impartialité et minutie afin d’éclairer comment elle a abouti à contredire les principes de l’éthique. Non pas celle des croyances ou des convictions, mais l’éthique publique de la solidarité que toute société responsable doit à quiconque n’est plus en capacité d’exprimer sa volonté, singulièrement lorsque certains s’arrogent le droit de statuer sur sa vie qu’ils estiment "indigne d’être vécue".
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BACKGROUND: The working group for palliative medicine within the Comprehensive Cancer Center (CCC) network funded by the German Cancer Aid in Germany has developed and published 14 Standard Operating Procedures (SOPs) for palliative care in CCCs. This study analyzed to what extent these SOPs have been implemented in the clinical routine in the CCC network one year after their publication.
METHODS: An online-based survey on the implementation status, limitations in daily practice and further themes was conducted between April and July 2018. In total, 125 health professionals in specialized palliative care from all 16 CCC locations were invited to participate. The data were analyzed descriptively using SPSS.
RESULTS: The response rate was 52.8%. More than half of the respondents (57.6%) knew about the free availability of SOPs on the CCC network website. The extent to which each SOP was being used actively in practice by the survey respondents ranged from a low of 22.7% (for the "Fatigue" SOP) to a highest of 48.5% (for the "Palliative Sedation" and "Respiratory Distress" SOPs). The respondents became aware of the SOP through recommendations from colleagues, team meetings or from the head of the department. The SOPs "Respiratory distress of an adult palliative patient" and "Palliative sedation" were perceived as the most practically oriented and understandable. Barriers to use SOPs were mainly limited time resources and lack of knowledge of existence and availability.
CONCLUSIONS: In practice, better knowledge about the SOPs and at the same time increased use can be achieved through systematic training or discussion of SOPs in regular team meetings. There is a need to take measures to optimize the implementation in clinical practice.
During an epidemic, almost all healthcare facilities restrict the visiting of patients to prevent disease transmission. For hospices with terminally ill patients, the trade-off between compassion and infection control becomes a difficult decision. This study aimed to survey the changes in visiting policy for all 76 hospice wards in Taiwan during the COVID-19 pandemic in March 2020. The altered visiting policies were assessed by the number of visitors per patient allowed at one time, the daily number of visiting slots, the number of hours open daily, and requisites for hospice ward entry. The differences in visiting policies between hospice wards and ordinary wards were also investigated. Data were collected by reviewing the official website of each hospital and were supplemented by phone calls in cases where no information was posted on the website. One quarter (n = 20) of hospice wards had different visiting policies to those of ordinary wards in the same hospital. Only one hospice ward operated an open policy, and in contrast, nine (11.8%) stopped visits entirely. Among the 67 hospice wards that allowed visiting, at most, two visitors at one time per patient were allowed in 46 (68.6%), one visiting time daily was allowed in 32 (47.8%), one hour of visiting per day was allowed in 29 (43.3%), and checking of identity and travel history was carried out in 12 wards (17.9%). During the COVID-19 pandemic, nearly all hospice wards in Taiwan changed their visiting policies, but the degree of restriction varied. Further studies could measure the impacts of visiting policy changes on patients and healthcare professionals.
Patients with cancer have an increased risk of developing severe forms of coronavirus disease 2019, and patients with advanced cancer who are followed at home represent a particularly frail population. Although with substantial differences, the challenges that cancer care professionals have to face during a pandemic are quite similar to those posed by natural disasters. We have already managed the oncological home care service in L’Aquila (middle Italy) after the 2009 earthquake. With this letter, we want to share the procedures and tools that we have started using at the home care service of the Tuscany Tumor Association during the coronavirus disease 2019 pandemic.
The importance of advance care planning (ACP) has been increasingly recognized by health systems. However, 46-76% of patients report engaging in ACP with lawyers, while only a minority report doing so with physicians. In the U.S. ACP with lawyers focuses on advance directive documents, naturally occurs outside of healthcare contexts, and is often uninformed by the clinical context, such one’s prognosis and clinical trajectory. These forms are regularly stored at home or at a lawyer’s office and not available at the bedside when needed in a medical crisis. Yet, in contrast to clinicians, lawyers hold sophisticated knowledge about their states’ advance directive law. Lawyers may also understand clients’ socioeconomic context and plans more broadly, which are known to be critical for contextualizing and personalizing patient care but are often not well-captured in healthcare. Aligning medical and legal approaches to ACP is important to ensuring the quality and value of those efforts. As an important first step toward this goal, we convened an interprofessional panel of medical and legal experts to elucidate the state of medical-legal ACP and begin to identify strategies to improve and align practices within and across professions. This article describes the historical disconnects between the medical and legal practice of ACP, recommendations and products of the interprofessional panel, and recommendations for future medical-legal collaboration.
Ce livre constitue une enquête sur l'affaire Vincent Lambert, homme en état végétatif autour duquel sa famille se déchire à coups de procédure judiciaire. En révélant les dimensions politique et romanesque de ce drame familial, elle pose également les questions éthiques de la fin de vie, de l'euthanasie et du suicide assisté.
Background: Periprocedural providers are encountering more patients with code status limitations (CSLs) regarding their preferences for resuscitation and life-sustaining treatment who choose to undergo palliative procedures. Surgical and anesthesia guidelines for preprocedural reconsideration of CSLs have been available for several years, but it is not known whether they are being followed in practice.
Objective: We assessed compliance with existing guidelines for patients undergoing venting gastrostomy tube (VGT) for malignant bowel obstruction (MBO), serving as an example of a palliative procedure received by patients near the end of life.
Design: Code status was determined at admission and throughout the hospitalization by chart review. Documentation of code status discussions (CSDs) was identified from provider notes and compared with existing guidelines.
Setting/subjects: An institutional database retrospectively identified patients who underwent VGT placement for MBO at two academic hospitals (2014-2015).
Measurements: We identified 53 patients who underwent VGT placement for MBO. Interventional radiologists performed 88% of these procedures. Other periprocedural providers involved in these cases included surgeons, gastroenterologists, anesthesiologists, and sedation nurses.
Results: CSLs were documented before the procedure in only 43% of cases, and a documented CSD with a periprocedural provider was identified in only 22% of CSL cases. Of all VGT placements performed in patients with CSLs before the procedure, only 13% were compliant with the guidelines of preprocedural reconsideration of CSLs.
Conclusions: Increased compliance with guidelines published by the American Society of Anesthesiologists, the American College of Surgeons, and the Association of Perioperative Registered Nurses is necessary to ensure goal-concordant care of patients with CSLs who undergo a procedure. Efforts should be made to incorporate these guidelines into the training of all periprocedural providers.
Aim: Pancreas cancer continues to carry a poor prognosis. Hospitalized patients with advanced chronic pancreatic illnesses increasingly receive palliative care due to its perceived clinical benefits. Meanwhile, a growing proportion of elderly patients are reportedly receiving life-sustaining procedures. Temporal trends in the utilization of life-sustaining procedures and palliative care consultation among dying patients with advanced chronic pancreatic illnesses in US hospitals were examined.
Methods and Materials: A serial, cross-sectional analysis was carried out using the National Inpatient Sample Database. Decedents 18 years and older with a principal diagnosis of pancreas cancer or other advanced chronic pancreatic illnesses from 2005 through 2014. The compound annual growth rates (CAGRs) and Cochrane-Armitage correction of 2 statistic were used. The receipt of life-sustaining systemic procedures, intra-abdominal local procedures and surgeries, and palliative care consultation were examined. Multilevel multivariate logistic regressions were performed to examine the association of various procedures with the utilization of palliative care consultation.
Results: Among 77 394 183 hospitalizations, 29 515 patients were examined. The CAGRs of systemic procedures, intra-abdominal procedures, surgeries, and palliative care were -4.19% (P = .008), 2.17%, -1.40%, and 14.03% (P < .001), respectively. The receipt of systemic procedures (odds ratio [OR] = 2.40, 95% confidence interval [CI], 2.08-2.74), local intra-abdominal procedures (OR = 1.46, 95% CI, 1.27-1.70), and surgeries (OR = 2.51, 95% CI, 2.07-3.05) was associated with palliative care consultation (Ps < .001).
Conclusions:Among adults with pancreatic cancer or other advanced chronic pancreatic illnesses in the US hospitals from 2005 to 2014, the utilization of life-sustaining systemic procedures decreased while the prevalence of palliative care consultation increased.
Background: Malignant ascites causes significant morbidity in patients with cancer. Paracentesis is effective at improving symptoms. However, the methods vary greatly between centres with most procedures performed as inpatients in the United Kingdom and limited evidence supporting the safety of outpatient procedures.
Aim: This report reviews the practice and safety of outpatient paracentesis in the DPU. Design: Retrospective review of patients who had undergone day case paracentesis in the Oncology DPU.
Setting: Procedures were carried out by experienced clinicians using ultrasonography within the oncology DPU. A total of 523 procedures occurred.
Results: Gynaecological cancer was the most common diagnosis. The mean number of procedures per patient was 4.1 and the mean volume of fluid removed was 3.3 l. Baseline observations were recorded in 20 cases and blood tests were not routinely requested. Complications were recorded in 6.7% procedures with an admission rate of 1.1%.
Conclusions: This review of clinical practice demonstrates that outpatient paracentesis is relatively safe and effective with a complication rate comparable to inpatient studies, reducing the need for admissions and pressure on local radiology services for the procedure. Areas of future development should consider a patient’s symptom assessment in response to the procedure.
La loi Leonetti a introduit la nécessité d’une procédure collégiale en matière de décision de limitation ou d’arrêts de traitements. Or, la collégialité ne va pas de soi dans la pratique professionnelle quotidienne. Il existe des freins culturels, institutionnels et spécifiques aux soignants. Des réunions interdisciplinaires peuvent être mises en place afin d’accompagner le médecin responsable et de prendre une décision la mieux adaptée à la situation singulière du malade.
Introduction: The oral cavity, in palliative care patients, is commonly the first site of discomfort and loss of function. Oral care, however, is often overlooked for these patients. Palliative oral care is a poorly researched area and the experiences of patients, their carers and relatives are seldom explored.
Aims: To explore the oral care experiences of palliative care patients, from the perspective of their carers and/or relatives.
Methods: Blogs and discussion forums, on public internet sites, were used as the data source. Data were analysed using thematic analysis.
Results: Eight blogs and eight discussion forums fulfilled the inclusion criteria and were analysed. Three main themes were identified: symptoms, procedures and emotions. Authors described oral symptoms that they could observe themselves and perceived as being distressing. There was an association between oral care procedures and the oral symptoms observed. However, routine oral care procedures were poorly described.
Conclusion: The data on oral care provided by the blogs and discussion forums included was scarce. It provided, however, preliminary insights into this poorly researched area. In this group, the importance of oral care for terminally-ill patients was frequently overlooked until the person's quality of life became compromised by their oral symptomatology.
Ce dossier analyse la loi n° 2016-87, dite loi Claeys-Leonetti, créant des nouveaux droits en faveur des malades et des personnes en fin de vie. Elle a été rendue publique le 2 février 2016. Elle vient compléter la loi dite Leonetti de 2005. Les décrets d'application sont parus le 3 août 2016. Cette loi renforce les droits des patients. Elle intègre les évolutions pour que la personne malade soit mieux entendue et pour que ses souffrances soient mieux prises en compte. Ce dossier comporte les articles suivants : - Des Directives anticipées devenues contraignantes et un droit à la sédation profonde. - Échanger avec le patient sur la maladie grave, les directives anticipées et la personne de confiance : en pratique, comment faire ? Saisir le moment, oser en parler en premier. - Quand et comment mettre en place une sédation à visée palliative en fin de vie ? Ne pas manquer les indications, respecter les bonnes pratiques et éviter les dérives. - Focus : Sédation profonde et continue maintenue jusqu'au décès : les particularités de la mise en oeuvre à domicile. - A retenir : Loi Claeys-Leonetti : messages clés pour le médecin traitant.
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BACKGROUND: To date, no randomised controlled trials on the integration of specialised palliative home care into oncology care have been identified. Information on whether existing models of integrated care are applicable to the home care system and how working procedures and skills of the palliative care teams might require adaptation is missing.
AIM: To gain insight into differences between early and late involvement and the effect on existing working procedures and skills as perceived by palliative home care teams.
DESIGN: Qualitative study - focus group interviews.
SETTING/PARTICIPANTS: Six palliative home care teams in Flanders, Belgium. Participants included physicians, nurses and psychologists.
RESULTS: Differences were found concerning (1) reasons for initiation, (2) planning of care process, (3) focus on future goals versus problems, (4) opportunity to provide holistic care, (5) empowerment of patients and (6) empowerment of professional caregivers. A shift from a medical approach to a more holistic approach is the most noticeable. Being involved earlier also results in a more structured follow-up and in empowering the patient to be part of the decision-making process. Early involvement creates the need for transmural collaboration, which leads to the teams taking on more supporting and coordinating tasks.
DISCUSSION: Being involved earlier leads to different tasks and working procedures and to the need for transmural collaboration. Future research might focus on the development of an intervention model for the early integration of palliative home care into oncology care. To develop this model, components of existing models might need to be adapted or extended.
There is a need to delineate best practices for referring, assessing, and retaining students suspected of posttraumatic stress (PTS) and maladaptive grief (MG) in school-based treatment. Evidence-based risk-screening procedures should accurately include students who are appropriate for group treatment and exclude students who do not require treatment or who are better served by other forms of intervention and support. We described and evaluated the sequence of steps used to screen 7th- and 8th-grade students (N = 89) referred by school staff as candidates for an open trial of group-based Trauma and Grief Component Therapy for Adolescents (TGCTA; Saltzman et al., in press). We used t tests to compare included versus excluded students on PTS symptom and MG reaction scores (University of California at Los Angeles Posttraumatic Stress Disorder Reaction Index; Grief Screening Scale) during the group screen, individual interview, and treatment-implementation phases. Logistic regressions tested the incremental utility of including measures of both trauma exposure and related emotional and conduct problems (Strengths and Difficulties Questionnaire) in the screening battery. Results suggest that the group screen helped to detect mental health needs and that the individual interview further identified students with PTS and emotional problems. Conduct problems and trauma exposure predicted attrition among students who qualified for treatment. MG incrementally predicted students who advanced from the group screening to the individual interview, and trauma exposure incrementally predicted attrition from treatment. Findings yield implications for improving research and practice, including procedures for enhancing school-based referral, screening, assessment, and selection procedures.
BACKGROUND: Literature data on the overuse and misuse of diagnostic procedures leading to end-of-life aggressiveness are scarce due to the limited amount of estimated economic waste. This study investigated the potential overuse of diagnostic procedures in a population of end-of-life patients.
METHODS: This is a retrospective study on consecutive advanced patients admitted into two Italian hospices. Frequency and relative costs of X-ray imaging, CT scans, MRI, and interventional procedures prescribed in the 3 months before admission were collected in patient electronic charts and/or in administrative databases. We conducted a deeper analysis of 83 cancer patients with a diagnosis of at least 1 year before admission to compare the number of examinations performed at two distant time periods.
RESULTS: Out of 541 patients, 463 (85.6%) had at least one radiological exam in the 3 months before last admission. The mean radiological exam number was 3.9 ± 3.2 with a relative mean cost of 278.60 ± 270.20 € per patient with a statistically significant (p < 0.001) rise near death. In the 86-patient group, a higher number of procedures was performed in the last 3 months of life than in the first quarter of the year preceding last admission (38.43 ± 28.62 vs. 27.95 ± 23.21, p < 0.001) with a consequent increase in cost.
CONCLUSIONS: Patients nearing death are subjected to a high level of "diagnostic aggressiveness." Further studies on the integration of palliative care into the healthcare pathway could impact the appropriateness of interventions, quality of care, and, ultimately, estimated costs.
BACKGROUND: Evidence suggests that the aggressiveness of care in cancer patients at the end of life is increasing. We sought to evaluate the use of invasive procedures at the end of life in patients with advanced non-small-cell lung cancer (NSCLC).
OBJECTIVE: To evaluate the utilization of invasive procedures at the end of life in Veterans with advanced NSCLC.
DESIGN: Retrospective cohort study of Veterans with newly diagnosed stage IV NSCLC who died between 2006 and 2012.
SETTING/SUBJECTS: Subjects were identified from the Veterans Affairs Central Cancer Registry.
MEASUREMENTS: All Veterans Administration (VA) and Medicare fee-for-service healthcare utilization and expenditure data were assembled for all subjects. The primary outcome was the number of invasive procedures performed in the last month of life. We classified procedures into three categories: minimally invasive, life-sustaining, and major-operative procedures. Logistic regression analysis was used to evaluate factors associated with the receipt of invasive procedures.
RESULTS: Nineteen thousand nine hundred thirty subjects were included. Three thousand (15.1%) subjects underwent 5523 invasive procedures during the last month of life. The majority of procedures (69.6%) were classified as minimally invasive. The receipt of procedures in the last month of life was associated with receipt of chemotherapy (odds ratio [OR] 3.68, 95% confidence interval [CI] 3.38-4.0) and ICU admission (OR 3.13, 95% CI 2.83-3.45) and was inversely associated with use of hospice services (OR 0.35, 95% CI 0.33-0.38).
CONCLUSIONS: Invasive procedures are commonly performed among Veterans with stage IV NSCLC during their last month of life and are associated with other measures of aggressive end-of-life care.
The importance of academic nurse researchers partnering with clinical nurses for clinical research has been well articulated. A 4-hour training program designed to equip staff nurses to become fully engaged researchers in a palliative care end of life communication-focused research study resulted in enriched human caring skills and professional growth. Results indicate that the training (didactic lecture, group reflection, role-playing) was adequate to prepare the nurses to deliver the study protocol. Relevance for primary investigators, nurses, clinical institutions, those interested in partnered research, and professional growth are discussed.
CONTEXT: Stroke is the second leading cause of death and the primary cause of disability worldwide. It is uncertain what care patients with stroke receive in their end of life care and what trends in care are in recent years.
OBJECTIVES: To investigate the changes in the use of intensive and supportive procedures received by Taiwanese stroke patients in their last month of life during 2000-2010.
METHODS: Analysis of claims data of 55,930 patients with stroke obtained from the National Health Insurance Research Database were performed to investigate the changes in the use of intensive and supportive procedures for Taiwanese stroke patients in their last month of life during 2000-2010.
RESULTS: Over the whole study period, 25.4% of patients with stroke were admitted to intensive care units (ICUs) in their last month of life. The percentages of patients receiving mechanical ventilation (77.4%-67.9%), cardiopulmonary resuscitation (CPR, 53.8%-35.8%), and inotropic agents (73.5%-64.3%) decreased over time. The percentages of patients receiving artificial hydration and nutrition (65.9%-73.3%) and sedative or analgesic agents (34.7%-38.6%) increased over time. Patients under 85 years old were more likely to be admitted to ICUs. Males were more likely to receive mechanical ventilation and CPR than females.
CONCLUSION: Over time the uses of supportive procedures increased, and the use of intensive procedures decreased in patients with stroke in the last month of life. This study highlights a need for research, guidelines and training in how to provide palliative care for end-stage patients with stroke.
Those involved in a sponsored clinical trial in Sue Ryder Leckhampton Court Hospice, and those involved in an inspection of that trial – Anne Parkinson, Mandy Budwal-Jagait, Andy Fisher, Gabriel Fox, Julie Hapeshi and Paul Perkins – recount the experience and advise on the procedures to be followed by all parties.
BACKGROUND: Latinos in the U.S. are almost twice as likely to progress to End Stage Renal disease (ESRD) compared to non-Latino whites. Patients with ESRD on dialysis experience high morbidity, pre-mature mortality and receive intensive procedures at the end of life (EOL). This study explores intensive procedure preferences at the EOL in older Latino adults.
METHODS: Seventy-three community-dwelling Spanish- and English-Speaking Latinos over the age of 60 with and without ESRD participated in this study. Those without ESRD (n = 47) participated in one of five focus group sessions, and those with ESRD on dialysis (n = 26) participated in one-on-one semi-structured interviews. Focus group and individual participants answered questions regarding intensive procedures at the EOL. Recurring themes were identified using standard qualitative content-analysis methods. Participants also completed a brief survey that included demographics, language preference, health insurance coverage, co-morbidities, Emergency Department visits and functional limitations.
RESULTS: The majority of participants were of Mexican origin with mean age of 70, and there were more female participants in the non-ESRD group, compared to the ESRD dialysis dependent group. The dialysis group reported a higher number of co-morbidities and functional limitations. Nearly 69% of those in the dialysis group reported one or more emergency department visits in the past year, compared to 38% in the non-ESRD group. Primary themes centered on 1) The acceptability of a "natural" versus "invasive" procedure 2) Cultural traditions and family involvement 3) Level of trust in physicians and autonomy in decision-making.
CONCLUSION: Our results highlight the need for improved patient- and family-centered approaches to better understand intensive procedure preferences at the EOL in this underserved population of older adults.